"These leaders with traumatic brain injuries show that many survivors can work independently and selflessly for the greater good of our brain injury survivor brain injury community. Many have worked with little fanfare and little acknowledgment of their work. We wish to extend our thanks to these trail blazers. We hope they are pleased to be listed in this honor roll of contributors." Honor Roll of early TBI Survivor Leaders. Source: tbisurvivors.net
People with traumatic brain injuries (TBI) have the same human rights afforded to other human beings. Any abridgement of a tbi survivor’s natural and/or legal rights must be given full scrutiny by appropriate legal authority. Source: tbisurvivors.net Author: Sue Hultberg, MA, JD
Brain Injury Network Announces the Human Rights Issues and Concerns of People With Acquired Brain Injury From Traumatic Brain Injury (TBI), Brain Cancer, Brain Illness, Stroke, and Other Forms of ABI
People With Acquired Brain Injuries Consider Their Human Rights and Their Basic Human Safety Net to Be Their Most Vital Issues
SANTA ROSA, CA--(Marketwire - January 11, 2011) - The Brain Injury Network, an all acquired brain injury survivor organization (founded 1998), has announced human rights issues important to the ABI survivor community. BIN is a USA national and international organization promoting ABI survivor collective advocacy, citizen action and human rights. People with ABI at BIN have developed a collective consciousness and have articulated many issues that need public declaration. BIN is disseminating a consumer driven policy platform. We request that other policy advocates emphasize our recommendations and work for laws, standards and procedures that will protect vulnerable people who have ABI.
"The most important thing to us is our human rights, not our role as patients or research subjects. We wish to be perceived as human beings with the same rights and desires to live safely, with the protection of law, and with the same respect and dignity that other people have," said Susan C. Hultberg, President and Executive Director of the Brain Injury Network and brain injury survivor. "Our membership has stated repeatedly that our main concern is our basic human rights and the basic human safety net. This means basic shelter, food, and medical care. It is our position that the basic human safety net for a person with incapacitating cognitive and/or physical disabilities after brain injury is even more important than community reintegrative retraining programming." BIN is also concerned about safety, privacy, and confidentiality concerns for people with ABI, especially individuals with brain injury who participate on Internet social communities. Web administrators of social communities for individuals with brain injuries should set privacy defaults to maximum and not allow public archiving of participants' posts in search engines.
Additionally, medical, legal, government and other venues should use consistent definitions of ABI and TBI. Medical authorities should create a Post-Traumatic Brain Injury Syndrome (PTBIS) traumatic brain injury medical classification. PTBIS is an umbrella term being circulated by BIN to medical authorities in the hopes that they will utilize this new medical classification.
Other policy statements and guidelines of the Brain Injury Network may be viewed on its website at http://braininjurynetwork.org http://health.groups.yahoo.com/group/survivoracquiredbraininjury
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)
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.
"The Brain Trauma Foundation (BTF) is a national non-profit organization dedicated to improving the outcome of traumatic brain injury (TBI) patients through Guidelines development, education, quality improvement programs, and clinical research." The BTF TBI-Trac and the Quality Improvement TBI Program "is a cooperative consortium of trauma centers dedicated to improving severe TBI care in the acute care setting. The QI TBI Program offers a step-by-step approach for incorporating quality and process improvements into the care delivery model for TBI." (See also http://cl.tbitrac.org/cl/cl.aspx) Contact Information: Brain Trauma Foundation 7 World Trade Center 34th Floor 250 Greenwich St. New York, NY 10007 Phone: 212-772-0608 Listed under Associations, Societies and Foundations; Medical, National Hospital Networks, New York, and Scientific Topics.
Listing added: Mar 9, 2010)
The First International Conference on Culture, Ethnicity and TBI ... File Format: PDF/Adobe Acrobat - View as HTML Contact Information: Brain Injury Services, Inc. 8136 Old Keene Mill Road, B-102 Springfield, VA 22152 Phone: 703-451-8881 Web Site: www.braininjurysvcs.org United Way #8237 Brain Injury Services is supported by state general funds administered by the Department of Rehabilitative Services.
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)