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Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy


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:
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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.
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Brain Injury Network Policy dated 9-8-13

We find it highly objectionable and unethical that certain attorneys are seeking out individuals with acquired brain injuries (from tbi, etc.), are enticing them to publically share their stories on the attorneys’ websites and blogs, and are further distributing said stories to other social media such as Facebook and YouTube. Also: The Attorney-Client Relationship. Informed Consent and Mental Competency. Commercial Solicitation for Attorney’s Business Services. Recommendations to the American Bar Association (ABA), the State Bar Associations, Ethics and Professional Conduct Advisory Committees, and Legal Ethicists.
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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
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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”.)
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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.
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The survivor board of directors approved public policy position statements of the Brain Injury Network (BIN), a survivor advocacy US national and international organization. The organization has been operational in Santa Rosa, Ca. since 1998. Two key missions of the Brain Injury Network are to formulate public policy that will best serve people with acquired brain injuries and to advocate for said policies on a USA national and international level. The organization has developed over 70 policies on behalf of the brain injury community with more policies in development. Additionally, policy dissemination is an ongoing project of the Brain Injury Network. The entire focus of the Brain Injury Network is survivors of acquired brain injuries.
Policy Topics as of 6-15-11:

Safety First

Ability Rights
ABI (Acquired Brain Injury) Subclassification Hierarchy
Advocacy Agencies
Advocate Competency
Advocates: Disclosure
Assisted Living Facilities

Best Practice Guidelines
Bicycle Helmet Law
Building Code Standards
Brain Injury Community

Civil Rights
Classification of TBI
Clinical Research
Cognitive Retraining (also called Cognitive Therapy or Cognitive Training)
Community Reintegration (Reintegrative Services)
Comprehensive Health Reform
Conflict of Interest
Counselor Training

Department of Mental Health
Disability Rights and Issues
Disclosures, Advocates
Disclosures, Medical Providers
Disclosures, Researchers
Disclosures, Web Sites
Doctor Education
Drug Companies

Empowerment, Patient

Financial Institutions
Florescent Lighting
Funding Priorities for Survivors

Gold Standard Research Studies

Helmet Law
High School Graduation
Hospital Privacy
Hospital Settings
Human Research Guidelines
Human Rights

Identification as People
Incarcerated Criminals with TBI

Law Abiding Survivors (We are the great majority.)
Law Enforcement
Least Restrictive Living Environment
Legal Rights
Local and County Services
Local Services vs. National Centers; Costly Duplication
Living Environments
Locked Facilities

Mandated Reporter Law
Medical Device Makers
Mental Illness

National Centers; Costly Duplication
Nursing Home Placements

On-Line Networking Web Sites
On-Line Recruitment of Patients
Organizations or Providers Offering Money to People with Brain Injuries or the Families of People with Brain Injuries

Patient Data Harvesting
Patient Empowerment
Patient Recruitment and Covert Devices Online to Recruit Patients to Medical Research Studies
Patient Recruitment Methodology Online or through Social Media
Persistent Vegetative State (PVS)
Persistent Wakeful but Unaware State (PWUS)
Physician Disclosures
Post-Acute Medical Environments
PostConcussion Syndrome
Post-Secondary Education
Post-Secondary Programs
Post-TBI Syndrome Diagnosis, Research and Treatment
Privacy On-Line
Privacy Settings on Web Sites Designed for Brain Injury Survivors
Profiting from Exposing Brain Injury Survivors' Identities
Psychologist Training
Psychotropic Drugs, Use of
PTSD (Post Traumatic Stress Disorder)


Raising Money to "Promote" Medical Research
Recruitment Methodology
Removal of Life Support
Research Studies

School Age Children with ABI
Skiing and Helmets
Social Community and On-Line Networking Websites
Social Communities for People with Brain Injuries
Social Media
Societal Norms and Conventions
Sports or Athletics Activities: A Good Mind for Life is more important than a Trophy
Stigma and Brain Injury
Strokes are not TBI's
Subclassification Hierarchy of Acquired Brain Injury (ABI)
Support Group Facilitation
Survivor Advocacy
Survivor Advocates
Survivor Identity, Exposure of
Survivor Priorities
Survivor Social Communities
Survivor Stories in Media

TBI is a Subset of ABI
The Term "Survivor"
Third Party Stakeholders

Universal Health Care

Veterans, US Armed Forces
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Why We Need Collective Advocacy
Article: We survivors speak best regarding our issues and regarding advocacy and public policy invovling our brain injury survivor community.
This site is dedicated to the world-wide brain injury community and especially to those who wish to participate in collective advocacy via the Brain Injury Network, a survivor advocacy organization.
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Brain Injury Network Post-Secondary Brain Injury (B. I.) Program Recommendations
These program recommendations are for service providers conducting post-secondary educational programs for adult students with cognitive challenges that have resulted from traumatic brain injury, acquired brain injury and other causes. (Published 2006.)
"We would like all chancellors, universities, colleges, state-wide college networks, AHEAD (the Association on Higher Education and Disability), the California Community Colleges Chancellor's Office and CAPED (the California Association for Post-Secondary Education and Disability) to take the following actions and instigate appropriate procedures for students with brain injuries in all colleges under their jurisdiction, direction, influence or control. Create system wide protocols regarding adult college students with cognitive challenges for all of the colleges under your jurisdiction, influence, direction or control...."
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This online social community is dedicated to bringing people with brain injuries together to work collectively on public policy and advocacy concerns of our surivor brain injury community. In addition, the SABI network provides a social and peer support gathering point on the Internet where attention to privacy concerns is more important than produciing a public archive forum which may be seen by all. SABI is not interested in disclosing survivor stories for advertising or securing some form of profit. SABI does not harvest "patient data". SABI does not sell member information nor does it seek commercial endorsements.
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NCCNHR "is a national nonprofit organization of consumers and advocates who define and achieve quality for people with long-term care needs."
The Locate an ombudsman section of the website is at
1828 L Street, NW, Suite 801
Washington, DC 20036
Phone: 202-332-2275
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The Survivors' Viewpoint articles from the Brain Injury Network. The BIN is tbi and abi survivor advocacy organization.
Articles list as of April 18, 2010:
A Chronic Disease
A Cure for Brain Injury?
Advocates: Conflicts of Interest
Brain Injury Awareness
Brain Injury Support Groups
Definition of ABI and TBI
The Survivor Independence Day Message of July 4, 2009
Medical Designations
Our Own Advocacy - Advocacy for and by People with Brain Injuries
Politically Correct Terminology
Post-TBI Syndrome - Dear Medical Community Please Consider a PTBIS Brain Injury Classification
Research, Clinical Trials, Studies and Programs
Social Communities
Survivor Organizations - Brainwaves Article from 2002
Survivor Public Policy
The Survivor Movement
Use of the Term Survivor
What We Need
Who is Representing Individuals with Brain Injuries?
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