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 Amazon.com gift certificate
• To learn more, visit http://www.aaspire.org/projects/healthcare1.html
• 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.

Regards,

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 www.aaspire.org/gateway.

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 www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora@aaspireproject.org.

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

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 http://iacc.hhs.gov/.

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

http://www.hhs.gov/news/press/2010pres/04/20100430a.html

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

Lisa Jo Rudy, who blogs at autism.about.com, 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.

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, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

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.

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!


Hello,

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.

WHAT YOU CAN DO:

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 http://www.congress.org/
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)

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.


Hello,

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.


WHAT YOU CAN DO:


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 http://www.congress.org/ 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.

Message:

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!