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
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
Listing added: Jun 19, 2011)
We at the Brain Injury Network survivor advocacy organization recommend the retirement of the term Persistent Vegetative State. In lieu of PVS, we ask that the medical community adopt the term “Persistent Wakeful but Unaware State” (PWUS). This term includes the requisite components of the diagnosis which are wakefulness yet unawareness. In the alternative, we have noted that on occasion the term Persistent Unaware State (PUS) is used, but it is not quite as illustrative as PWUS, in our lay persons’ opinion. However, it is clear to us, the brain injury survivor community that neither PWUS nor PUS would be so insensitive, dehumanizing or charged a term as PVS. Source: Brain Injury Network
The Brain Injury Network, a USA national and international nonprofit organization operated by and for brain injury survivors, is pleased to announce that two new public policies were approved by the Board of Directors 12-11-10. The board members are brain injury survivors. These are the policies people with brain injuries would like to see promoted by the public sector. This is a link to the policy entitled Post-Acute Medical Environments, Assisted Living Facilities and Nursing Home Placements for People with Brain Injury; Use of Psychotropic Drugs.
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...."
The Brain Injury Network, a USA national and international nonprofit organization operated by and for brain injury survivors, is pleased to announce that two new public policies were approved by the Board of Directors 12-11-10. The board members are brain injury survivors. These are the policies people with brain injuries would like to see promoted by the public sector. This is a link to the policy entitled: Privacy Settings on Web Sites Designed for Brain Injury Survivors http://braininjurynetwork.org/publicpolicy/privacysettings.html
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.