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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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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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Article on Brain Injury Advocacy from the Brain Injury Network web site. BIN is an abi survivor advocacy organization.
"We also believe in collective-advocacy by and for our survivor community. Collective-advocacy is the process by which we people with acquired brain injuries organize, formulate, collaborate, reach consensus and articulate for our collective survivor community's interests.... Our advocacy reflects our concerns and spells out some particular policies and protocols that we believe will be in the best interests of our community. Please study our position statements. Please initiate and carry out policy that will promote our policy concerns. Thank you."
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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 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.
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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.
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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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This web site concerns itself with the worldwide traumatic brain injury (TBI) survivor community, a robost and vibrant community of individuals who have sustained some kind of traumatic brain injury. The site honors TBI brain injury survivor leaders. "Many people have been members of our community a long time and have worked hard on behalf of our TBI survivor community. Please see our TBI Survivor Honor Roll, which we intend to expand over time." There is a discussion of the early history of the "TBI Survivor Movement", sometimes referred to as the "Brain Injury or Acquired Brain Injury Survivor Movement". There are also discussions of the causes and forms of TBI. TBI is a subset of ABI (acquired brain injury). To help survivors understand the difference between traumatic brain injury and other types of brain injury, information about other kinds of brain injury is also included. Additionally, criteria which helps tbi survivors evaluate online brain injury or tbi social communities is also included. The author of the material is Susan C. Hultberg, J.D. (1978), tbi survivor (1985), and M.A. (1996).
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This thesis, written in 1996, and based on research undertaken in 1995 and 1996, represented "research from our point of view" and was conducted by a survivor of acquired brain injury, Susan C. Hultberg (Sue Hultberg). This thesis was submitted in partial satisfaction of the requirements for the degree of Master of Arts from the School of Education, Saint Mary's College, Moraga, California in April, 1996.

The thesis contained a satisfaction survey, review of the literature, methodology, findings, conclusions, implications, recommendations for further research, glossary, references and appendix. Of particular interest were recommendations by the author for school systems, and the TBI questionnaire itself which focused on survivor satisfaction levels with various kinds of service providers but also strategies self-initiated by survivors to aid in their rehabilitation.

The focus of the study was to understand traumatic brain injury (TBI) from the viewpoint of the survivor of TBI. Thirty individuals who had sustained a TBI answered a questionnaire about issues relating to TBI. Responses to 65 items were secured. Issues addressed included medical predictors and work-outcome, neuropsychological and other assessments, TBI-engendered deficits, rehabilitation, emotional reaction, emotional support sources, treatment and information sources, coordination between care-giving institutions, modifications and accommodations at work and school, and survivor-helpful devices.

Many findings were consistent with evidence in the literature. However, PostConcussional symptoms were reported by a larger range of survivors than has been suggested in previous research. Reduction in some category severity levels two years post-TBI was also suggested. Previous research had not focused upon survivors’ ratings of care-giving institutions, professionals and others. The present study addressed such ratings.

Based on a review of the literature and the results of the study, it was recommended that institutions and professional care-givers take proactive steps to inform TBI survivors and their families of sources of emotional support, treatment, and information. It was also suggested that professionals better coordinate support services.
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