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Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy

Societal Issues

Susan C. Hultberg, president of the Brain Injury Network, an international and U.S. national advocacy organization for people who have sustained brain injuries, is pleased to announce the publication of her new book entitled Brain Injury Advocates: The Emergence of the People with Acquired Brain Injury Human and Civil Rights Movement. The book is currently available for purchase at the following link:
(Clicks: 175; Comments: 0; Listing added: Aug 2, 2012) Listing Details Report Broken  Listing
This is the first ever USA national and international brain injury (abi which includes tbi) survivor policy and collective advocacy online forum. This online social community has developed, implemented and disseminated public policy on behalf of the brain injury survivor community since 2006. Everyone involved is a brain injury survivor and a brain injury survivor advocate. This is also a chat; peer support; information, education and referral online social community. This group is survivor operated and survivor-led. The owner/moderator is a tbi (traumatic brain injury) survivor. SABI is affiliated with the Brain Injury Network, a Section 501(c) (3) nonprofit advocacy organization and network operated by and for survivors of brain injury. Topics discussed include survivor priorities, brain injury survivor human rights, best practices for service provider organizations, government public policy, problems with insurance, community access, health care costs, basic safety-considerations, patient empowerment, patient advocacy, community reintegration, post tbi, Post TBI Syndrome, assistive devices, medical research standards, privacy and safety on the Internet, assessing social communiities, standards for college programs for students with brain injury, sport injuries, children and brain injury, school and brain injury, and a host of other topics.
(Clicks: 232; Comments: 0; Listing added: Feb 2, 2008) Listing Details Report Broken  Listing
August 1, 2006: Brain Injury Network (BIN) is calling for a system of regulation, review and standards nationwide for utilization in college and other post-secondary disability programs. The Brain Injury Network, a survivor-led and operated association of people with acquired brain injuries from traumatic brain injury (tbi), stroke, tumor, illness and other abi categories, is advocating for national standards for acquired brain injury programs at colleges and universities. Indeed, international standards are needed. But since the Brain Injury Network originates in California, U.S.A., we are first calling for standards to be implemented in the United States of America.... It has dawned on us that new laws are needed to protect adults with cognitive challenges who attend colleges all across the United States.
Regulation, Review and Standards For College and Other Post-Secondary Level Disability Programs Are Needed
National Standards
Regulation of College Disability Programs
Review of College Disability Programs
Public Access to Information about College Disability Programs
(Clicks: 55; Comments: 0; Listing added: Apr 19, 2010) Listing Details Report Broken  Listing
Post-Secondary Education Brain Injury Program Protocols as developed by the Brain Injury Network (BIN)
Article dated 9-9-09
This section discusses the Brain Injury Network recommendations for nationwide protocols for postsecondary level college programs for students with brain injuries. These protocols were developed by the Brain Injury Network in the years 2005-2006. Let us keep in mind that many people with brain injuries have very few options for rehabilitation from their injuries. One of the few available, affordable, resources for cognitive retraining, or training, is the postsecondary educational system....Therefore, we recommend the creation of nationwide protocols for all postsecondary education programs for students with brain injuries. (In fact, we espouse “national standards for college programs”.)
(Clicks: 15; Comments: 0; Listing added: Apr 19, 2010) Listing Details Report Broken  Listing
The Brain Injury Network - ABI Advocacy by Survivors Cause on Facebook.
Please help brain injury survivor advocates raise public awareness about issues of importance to our survivor community.
(Clicks: 27; Comments: 0; Listing added: Apr 19, 2010) Listing Details Report Broken  Listing
Brain Injury Network press release regarding the human rights issues of people with acquired brain injuries. MarketWire Press Release Dated 1--11-11
(Clicks: 9; Comments: 0; Listing added: Jun 19, 2011) Listing Details Report Broken  Listing

Fundamental Human Rights, Legal Rights, and Civil Rights for People with Brain Injuries; the Brain Injury Survivor Movement; Our Collective Identity and Common Purpose; the Human, Legal and Civil Rights Issues of People with Brain Injuries
Source: Brain Injury Network
(Clicks: 13; Comments: 0; Listing added: Jun 19, 2011) Listing Details Report Broken  Listing
Brain Injury Network Article: Protect Your Privacy and Guard Your Confidential Information On-Line!
Summary: If you want to join social on-line communities, check them out, thoroughly, before you join. Also, find out what kind of credentials the administrators of the site have, if you can. And when in on-line groups or communities:
(1) Sign up using an alias name.
(2) Use a private profile.
(3) Do not give out your address, phone number, or birth date.
(4) Do not use your real name or your parent’s or other relatives’ last names in discussions.
(5) Don’t use your primary email address, especially if it contains your actual name. Create easily disposable secondary (subaccount) email addresses to use instead.
(6) Don’t share medical data about yourself by filling out on-line forms from social communities. For example, don’t share your insurance particulars, your doctor’s name,
your medication list, etc.
(7) If a site allows you to modify your privacy and archival settings (a good sign) check them, because chances are the default setting is to allow your content to be
accessible to the entire Internet community, and you may wish to tighten up who may view your posts.
(8) Just remember that if you share any content with anyone, anyone at all, he or she will be able to share your material elsewhere (even though that would be impolite it
happens all of the time), so be careful what you write on the Internet. You never know where it will end up, and once you have written something it may be on the
Internet for eternity.

Be careful! Be watchful. Be wise.
(Clicks: 7; Comments: 0; Listing added: Apr 19, 2010) Listing Details Report Broken  Listing
SABI means "Survivor of Acquired Brain Injury" and also "Survivor Advocate regarding Brain Injury". This term was coined by abi survivor (and tbi survivor) Sue Hultberg in the year 2000. The term is used as a rallying term for survivor advocates who are associated with the Brain Injury Network, an international and USA national brain injury survivor advocacy non-profit organization that operates from Santa Rosa, California. The Brain Injury Network hosts several SABI advocacy forums online. SABI advocates are interested in the creation and dissemination of survivor public policy. SABI advocates think in terms of a survivor-driven agenda.
(Clicks: 252; Comments: 0; Listing added: Apr 22, 2010) Listing Details Report Broken  Listing
BIN is pleased to announce that a new policy statement was adopted by the BIN Board of Directors on Oct. 16, 2011. The BIN Board of Directors is comprised of brain injury survivors. The policy is entitled Stigma, Marginalization and Stereotypical Thinking Regarding People with Acquired Brain Injuries.
(Clicks: 13; Comments: 0; Listing added: Dec 12, 2011) Listing Details Report Broken  Listing
People with traumatic brain injuries (TBI) have the same human rights afforded to other human beings.
Any abridgement of a tbi survivor’s natural and/or legal rights must be given full scrutiny by appropriate legal authority.
Author: Sue Hultberg, MA, JD
(Clicks: 8; Comments: 0; Listing added: Jun 19, 2011) Listing Details Report Broken  Listing

SOURCE: Brain Injury Network

Jan 11, 2011 11:11 ET

Brain Injury Network Announces the Human Rights Issues and Concerns of People With Acquired Brain Injury From Traumatic Brain Injury (TBI), Brain Cancer, Brain Illness, Stroke, and Other Forms of ABI

People With Acquired Brain Injuries Consider Their Human Rights and Their Basic Human Safety Net to Be Their Most Vital Issues

SANTA ROSA, CA--(Marketwire - January 11, 2011) - The Brain Injury Network, an all acquired brain injury survivor organization (founded 1998), has announced human rights issues important to the ABI survivor community. BIN is a USA national and international organization promoting ABI survivor collective advocacy, citizen action and human rights. People with ABI at BIN have developed a collective consciousness and have articulated many issues that need public declaration. BIN is disseminating a consumer driven policy platform. We request that other policy advocates emphasize our recommendations and work for laws, standards and procedures that will protect vulnerable people who have ABI.

"The most important thing to us is our human rights, not our role as patients or research subjects. We wish to be perceived as human beings with the same rights and desires to live safely, with the protection of law, and with the same respect and dignity that other people have," said Susan C. Hultberg, President and Executive Director of the Brain Injury Network and brain injury survivor. "Our membership has stated repeatedly that our main concern is our basic human rights and the basic human safety net. This means basic shelter, food, and medical care. It is our position that the basic human safety net for a person with incapacitating cognitive and/or physical disabilities after brain injury is even more important than community reintegrative retraining programming."
BIN is also concerned about safety, privacy, and confidentiality concerns for people with ABI, especially individuals with brain injury who participate on Internet social communities. Web administrators of social communities for individuals with brain injuries should set privacy defaults to maximum and not allow public archiving of participants' posts in search engines.

Additionally, medical, legal, government and other venues should use consistent definitions of ABI and TBI. Medical authorities should create a Post-Traumatic Brain Injury Syndrome (PTBIS) traumatic brain injury medical classification. PTBIS is an umbrella term being circulated by BIN to medical authorities in the hopes that they will utilize this new medical classification.

Other policy statements and guidelines of the Brain Injury Network may be viewed on its website at
(Clicks: 188; Comments: 0; Listing added: Jan 11, 2011) Listing Details Report Broken  Listing
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