Saturday, November 20, 2010

True Confessions

By Meg Evans.

I've been foiled at every turn by clever bloggers who have unearthed the deepest darkest secrets of my nefarious plots. My scheme for world domination is no more! Amidst the shattered wreckage of my best-laid plans, there's nothing to be done but to admit the scandalous truth:

I am Bonnie Offit.

More seriously, I have to confess that I've been neglecting both this blog and the ASAN Southwest Ohio chapter. I don't have any good excuses for it; I just got busy with other things and didn't put enough time into keeping them going. Look for more chapter activities to get underway in the new year. In the meanwhile, I'm turning on comment moderation to keep the blog free of spammers and trolls.

Happy holidays to all!

Tuesday, July 27, 2010

IACC Public Comment Reminder

The public comment period for the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research closes this Friday, July 30, 2010, as stated in the IACC's reminder notice set forth below. The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. The Autistic Self Advocacy Network encourages public participation in the IACC's proceedings.

From: NIMH IACCPublicInquiries (NIH/NIMH)
Date: Mon, Jul 26, 2010 at 3:20 PM
Subject: The IACC RFI Closes This Week!

Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan Closes This Friday, July 30, 2010

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: Responses will be accepted until this Friday, July 30, 2010.

Wednesday, June 23, 2010

NCD Appointment of Ari Ne'eman Confirmed

The Autistic Self Advocacy Network would like to thank President Obama and the U.S. Senate for the nomination and confirmation of ASAN President Ari Ne'eman to serve as a member of the National Council on Disability (NCD). He will be the first Autistic person to serve as a member of NCD. An independent federal agency, NCD makes recommendations to the President and Congress on issues of importance to Americans with disabilities. To learn more about NCD, go to

An article about the confirmation can be found on Disability Scoop:

Thursday, June 10, 2010

Disability Representation in Health Care Reform

In light of the significant barriers faced by people with disabilities with regard to health care access, ASAN has signed a joint letter from cross-disability organizations calling on the U.S. Health Resources and Services Administration to include representation of the cross-disability community in designating medically underserved populations. The letter has been published on the main ASAN website and is reposted below.

June 9, 2010


Kathleen Sebelius
Health and Human Services

Mary Wakefield
Health Resources and Services Administration

Pam Hyde, JD
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)


Access Living
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women's Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV - The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at:
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

Wednesday, June 2, 2010

Book Review: Aspergirls by Rudy Simone

The subtitle of this book is "Empowering Females with Asperger Syndrome," and it is written in a pleasant, conversational style that mixes interview quotes with the author's observations and advice on a wide variety of issues. Rudy Simone expresses a desire to help women on the spectrum feel validated, overcome depression, and become better understood. Most of the chapters, after discussing a specific issue relevant to autistic females, end with advice for "Aspergirls" and for their parents on that issue.

After stating that a love for information is an autistic trait, Simone observes that school often can be difficult because of bullying and loneliness, and that it is important to take action when this happens. She advises dealing with stress and sensory overload as related issues, which can be improved by taking good care of oneself through exercise, a healthy diet, avoiding situations that are likely to be stressful or overloading, and self-calming activities such as rocking and spinning that help to relieve stress.

Females on the spectrum tend to internalize a lot of guilt as a result of misunderstandings, Simone writes, and to feel uncomfortable with gender roles. Puberty brings many challenges, from its physical aspects to the issues of dating and socializing, and can be an age when selective mutism is triggered by increased social anxiety.

University students may tend to push themselves too hard and try to accomplish too much at once. Simone stresses the importance of setting aside enough time to rest and decompress, as well as seeking out disability services and counseling to the extent needed. Getting a degree can make it possible to have a satisfying career in one's field of interest, rather than a stressful and low-paying job. She urges young women to get whatever help they need to make it through college and not to give up.

She identifies self-awareness as crucial in making decisions about marriage and children. Rather than drifting into a conventional family life because of social expectations, the first step should be for a woman to consider carefully what she wants and needs. Finding a compatible partner and knowing what to expect as a mother should not be taken for granted.

Rituals, blunt speech, and differences in expressing emotion often result in misunderstandings. It is not unusual for women on the spectrum to be misdiagnosed and given inappropriate medications. Simone makes clear that she is not opposed to the use of medications by those who find them helpful, but she urges careful evaluation of how well they are working and of whether the benefits outweigh the risks.

Depression involves feeling powerless, she writes, and often can be helped by getting into a better environment and learning more effective coping skills. A more pleasant environment also can help with issues of controlling one's temper. She discusses aging and health concerns, recommending natural foods and supplements while also pointing out that autistics can be very sensitive to dietary changes and that excessive amounts of supplements can cause problems.

The book has a noticeable New Age flavor, mentioning such topics as karma, blocked chi, and psychic powers. Those who enjoy such digressions will probably find it entertaining. Simone has a tendency to overgeneralize at times by discussing particular traits as if they applied uniformly to all women on the spectrum; but this style of writing helps her to build an empathetic rapport with readers who share those traits, and she is being more careful to avoid stereotyping than she has been in the past. Overall, this is an ambitious effort, touching on many different aspects of life as a woman on the autism spectrum, and providing advice that is likely to be helpful for many readers.

Monday, May 3, 2010

Research Study on Healthcare Inequities

Guest post by Elesia Ashkenazy, ASAN Board Member and Portland, Oregon Chapter Coordinator.

Finally, something about Autistics done with Autistics that might actually help us out!

• Participate in research, not just about Autistics, but with Autistics!
• Have your voice included in research!
• The Gateway Project is recruiting adults over the age of 18 to participate in online studies.
• AASPIRE is conducting a new Gateway study about healthcare inequities.
• Participants may win a $25 gift certificate
• To learn more, visit
• Please share this invitation to participate in research widely!

AASPIRE is currently working on a project called the Gateway Project. Our project serves as a gateway to research that is committed to inclusion, respect, accessibility, and relevance to the community of autistic adults. The Gateway Project includes a series of online studies on topics such as healthcare access and quality, online sense of community and identity, and problem solving. The project is open to individuals with and without disabilities, as well as to individuals on the autistic spectrum.

I have appended our flier for your convenience.


Elesia Ashkenazy

ASAN, Board member & Chapter Coordinator

AASPIRE, Community Partner & Community Council Chair

Be Included in Autism Research
The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in
research WITH autistic adults, not just ABOUT autistic adults.
The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

*encourage the inclusion of autistic adults in matters which directly affect them;

*include autistic adults as equal partners in research about autism;

*answer research questions that are considered relevant by the autistic community;

*use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the AASPIRE the Gateway Project, you can

Go to the Gateway home page at

Send an email to Dora Raymaker at

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

Friday, April 30, 2010

Secretary Sebelius Appoints Ari Ne'eman to IACC

The Autistic Self Advocacy Network applauds HHS Secretary Kathleen Sebelius' appointment of ASAN President Ari Ne'eman to the Inter-Agency Autism Coordinating Committee (IACC). The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism. ASAN has given regular public comment at the IACC in the past and looks forward to continuing to be an active part of the IACC process. To learn more about the IACC, go to

A news release has been posted on the Health & Human Services website:

Monday, April 19, 2010

Book Review: Get Out, Explore, and Have Fun!

Lisa Jo Rudy, who blogs at, has written an informative and well-organized book full of helpful tips for getting kids on the autism spectrum involved in activities. Her book, entitled Get Out, Explore, and Have Fun! How Families of Children with Autism or Asperger Syndrome Can Get the Most out of Community Activities, begins with a thoughtful discussion of why it is so important for autistic children to be involved in their communities.

In the real world, she points out, relationships usually develop based on shared interests and experiences. Therapeutic settings with artificially planned interactions, however well intended, cannot substitute for the everyday life and relationship lessons that flow from regular participation in the community. Although therapy sessions can be helpful in teaching specific skills, too much time spent in the therapist's office can have the unintended effect of depriving an autistic child of opportunities to take part in ordinary social situations and to learn from them.

Identifying a child's strengths and interests, Rudy suggests, should be the starting point in finding activities at which a child is likely to succeed. For instance, a child who loves Thomas the Tank Engine may also enjoy train museums, scenic train rides, and model train exhibitions. Taking part in such activities can go a long way toward enabling a child to become more confident and able in social settings generally. These experiences may create a strong foundation for a lifetime of pleasant social activities with others who have similar passions, or in some cases may even lead to a related career.

The book is organized into easy-to-follow sections discussing how to get children involved in particular types of activities: sports, youth groups, museums and zoos, faith communities, the arts, camping and the natural world, special-interest clubs, and family outings. Although group leaders and others in positions of authority may not be familiar with autism, this should not deter parents from seeking opportunities for inclusion, Rudy advises. In today's world, an increasing number of programs for children have been specifically designed to be autism-friendly, while others may need only small modifications to accommodate a child's needs. Several of the book's sections end with tip sheets for activity leaders, which are designed to be copied by parents and used as a starting point for discussion of how best to integrate their child into an activity.

Inclusion is not only the right thing to do, Rudy explains; it also has direct financial benefits to community organizations struggling to attract new participants and supporters in a difficult economy. Although some program organizers may initially balk at the perceived cost or difficulty of making their activities more accessible to kids on the spectrum, they may be persuaded to support inclusion more enthusiastically by means of a detailed proposal showing the benefits to be gained. A sample grant proposal for developing an autism-friendly activity is included at the end, along with a list of useful resources for families.

Overall, the book remains clearly focused throughout on the topic of practical solutions to families' inclusion concerns. It is refreshingly free of controversial digressions or emotionally loaded language. While Rudy does not gloss over the difficulties that families may encounter, she consistently maintains an upbeat, can-do attitude and breaks down her advice into small, easily manageable steps for parents who may be feeling overwhelmed and unsure of what to do. This perceptive, well-structured book seems likely to help many families and, in encouraging the development of more autism-friendly activities, to benefit the community as a whole.

Thursday, March 4, 2010

House Passes Restraint and Seclusion Bill

ASAN is pleased to announce that the House of Representatives has taken action to protect students with disabilities from abuse by passing the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) by a vote of 262-153. Many thanks to all who called or visited their representatives to show support for the legislation! The statement below was prepared by the Justice for All Action Network, a coalition of disability rights groups including ASAN.

For Immediate Release:

March 4, 2010

Contact: Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145

Andrew Imparato, American Association of People with Disabilities, (202) 521-4301

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) -- The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

“The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities,” said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

“When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion,” said Durbin-Westby. “We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion."

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145,; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301,

Tuesday, March 2, 2010

Ohio Parent Survey on Autism and IEP Collaboration

ASAN Southwest Ohio has received a request to post an announcement and link to a brief online survey on the topic of Autism and IEP Collaboration. In light of the wording of question #9, we would like to clarify that ASAN does not endorse or promote the view that autism has "bio-medical aspects." The survey is intended for parents and guardians who are Ohio residents, who have children on the autism spectrum, and who are active with IEP processes currently.

Autism and IEP Collaboration Survey

Please consider completing a brief online survey targeting parents and guardians and their perceptions of the collaboration process for IEPs. The survey is specifically targeted to those on the Autism Spectrum and reside in Ohio.

This survey is being conducted by a graduate student at the University of Dayton completing her M.Ed. as well as obtaining licensure as an Intervention Specialist.

Please complete the survey by following this link to the Google Docs location.

Tuesday, February 23, 2010

More Calls Needed on Restraint and Seclusion

We are continuing to work toward passage of the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247, S. 2860) to protect students from abuse. More Senate co-sponsors are needed -- see the Action Alert below. Please call if you can!


On behalf of APRAIS (the Alliance to Prevent Restraint, Aversive Interventions and Seclusion), the Autistic Self Advocacy Network along with other APRAIS organizations is encouraging you to contact your congressional representatives during our National Call-In Day on February 26, 2010 and tell them to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247, S. 2860).

Recently, the House Committee on Education and Labor voted H.R. 4247 out of committee with a vote of 35 to 10. Your hard work has certainly made a difference, but we need your continued efforts to advance this important legislation. Specifically, we need your assistance to get the bill moved to the floor for a full House vote and to obtain Co-sponsors for the Senate version, S. 2860.

Senator Chris Dodd (D-CT) introduced the Preventing Harmful Restraint and Seclusion in Schools Act in the Senate, but we need to increase the number of Senate Co-Sponsors and get this bill out of committee as soon as possible. Once passed, this legislation will provide students with and without disabilities vital protections against abuse in schools.


Ask your Congressional Representative to Co-sponsor H.R. 4247 and your Senators to Co-Sponsor S. 2860 on Friday, February 26th!!

To find out the names of your US Senators and Representative, go to
Dial the Capitol Switchboard at 202-224-3121 and ask for the offices of your US Senators and Representative
Ask to speak to the person working on education issues
Identify yourself as a constituent and the organization that you represent (if any)

Wednesday, February 3, 2010

More Action Needed on Restraint & Seclusion Bill

The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) is going to committee Thursday, Feb. 4th. More phone calls to representatives are needed immediately to keep strong protections for students in the legislation. There will be a live webcast from the Education and Labor Committee website at 11:00 am Eastern time.


We have just been informed that H.R. 4247, the Preventing Harmful Restraint and Seclusion in Schools Act is going to be marked up by the House Education and Labor Committee this coming Thursday. In order to avoid amendments to the legislation that could potentially weaken the bill's ability to protect students, it is important we send a clear message to Congress to pass H.R. 4247 and to keep it strong. This is a crucial period for the legislation and we're urging all of you to call your Representatives before Thursday to tell them to co-sponsor and support the bill.


Call your Congressional representative to co-sponsor H.R. 4247. Encourage your friends, family, and coworkers to participate too!

To find out the names of your Representative, visit and type in your zip code.
The names of your Representatives will be located on the left side of the page under President & Congress.
Call the Capitol Switchboard at (202) 224-3121 and ask to speak to your representative. You can provide them with your zip code if you do not know his or her name.

Identify yourself as a constituent and the organization that you represent (if any).
If you have a restraint and seclusion story, please give them some of the details so they understand why these bills are so important.


For your Representative: “I am calling to urge (your Representative) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools. HR 4247 is being marked up this Thursday, and your support can help make sure it passes and remains strong. Currently, seventeen states have no protections whatsoever against the use of harmful restraint and seclusion in schools. HR 4247 would create a basic floor of protection and fund teacher training to protect children and keep our schools safe.”

Thank you for your efforts and please keep up the good work! Nothing About Us, Without Us!

Edit: The bill was reported favorably to the full House by a vote of 35-10. Many thanks to everyone who helped by calling their representatives about it!

Friday, January 15, 2010

Restraint & Seclusion National Call-In Day - Contact Your Members of Congress

Please repost and distribute the announcement below, which explains how to contact your members of Congress on Thursday, January 21st, to ask for their support in preventing abusive restraint and seclusion in the schools.

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.


Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

• To find out the names of your US Senators and Representative, click here (link to
• Ask for the offices of your US Senators and Representative
• Ask to speak to the person working on education issues
• Identify yourself as a constituent and the organization that you represent (if any)

Message: “ I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit to learn more.

The Autistic Self Advocacy Network and the APRAIS Coalition

Wednesday, January 6, 2010

Action Alert on Autistic Child Charged with Felony

As a consequence of a school restraint incident, an 11-year old Autistic boy in Arkansas named Zakhqurey Price has been charged with felony assault. There were no serious injuries, and the incident occurred under circumstances where the use of restraint would not have been legal if recently introduced federal civil rights legislation to protect children in schools had been in effect. Please take action by contacting the school principal and superintendent to inform them of your concerns and, if you can, repost the ASAN Action Alert set forth below.


In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now. Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
School Board Office: 1-479-785-2501 Ext. 1201

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. His grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

Update: The hearing has been rescheduled for April 13th. Click here for more on how you can support Zakh and his family.