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. Topics: 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
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."
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:
Ability Rights ABI (Acquired Brain Injury) Subclassification Hierarchy Advocacy Agencies Advocate Competency Advocates: Disclosure Assessments 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 Crime
Department of Mental Health Dignity Disability Rights and Issues Disclosures, Advocates Disclosures, Medical Providers Disclosures, Researchers Disclosures, Web Sites Doctor Education Drug Companies
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 Stakeholders 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 Terminology The Term "Survivor" Third Party Stakeholders
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.
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.
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.
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.
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).
Listing added: Nov 19, 2010)
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.
Abstract: 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.