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
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”.)
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 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...."
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.
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 http://nccnhr.org/ombudsman Address: 1828 L Street, NW, Suite 801 Washington, DC 20036 Phone: 202-332-2275
Listing added: Dec 19, 2009)
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 SABI 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?
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.