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Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy

US Government

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:
(Clicks: 174; Comments: 0; Listing added: Aug 2, 2012) Listing Details Report Broken  Listing
U.S. Government Site.
"MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated MEDLINE searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news."
(Clicks: 7; Comments: 0; Listing added: Sep 3, 2009) Listing Details Report Broken  Listing
ejournal (from the U. S. Government web site
Disability and Ability
November 2006
"With support, people can overcome even severe disabilities while maximizing their abilities and lead fulfilling and productive lives. This journal presents some aspects of such efforts. We hope you will enjoy reading about the Americans with Disabilities law and about the programs underway to help turn disabilities into abilities, from accommodation to technology and medical research. Opening opportunities and removing barriers to people with disabilities is a work in progress, but as you will see in some of these articles, the results can be truly inspiring."
(Clicks: 4; Comments: 0; Listing added: Aug 10, 2009) Listing Details Report Broken  Listing (a U.S. government site from the Department of Labor's Office of Disability Employment Policy [ODEP]) provides quick and easy access to comprehensive information about disability programs, services, laws and benefits.
Disability-specific information for people with disabilities... databases, fact sheets, news articles and other resources ... "Connecting the Disability Community to Information and Opportunities." It was formerly called
To find disability resources in your state just click on the Find State and topic(s)
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Welcome to Nursing Home Compare. The primary purpose of this tool is to provide detailed information about the past performance of every Medicare and Medicaid certified nursing home in the USA...
Why they took away this link ( and made a three line link, I don't know.
(Clicks: 2; Comments: 0; Listing added: Apr 2, 2008) Listing Details Report Broken  Listing
National Bioethics Committee
Research Involving Human Biological Materials: Ethical Issues and Policy Guidelines, Volume II, Commissioned Papers January 2000
File Format: PDF/Adobe Acrobat

The National Bioethics Advisory Commission (NBAC) functions are defined as follows:

a) NBAC shall provide advice and make recommendations to the National Science and Technology
Council and to other appropriate government entities regarding the following matters:

1) the appropriateness of departmental, agency, or other governmental programs, policies,
assignments, missions, guidelines, and regulations as they relate to bioethical issues arising
from research on human biology and behavior; and

2) applications, including the clinical applications, of that research.

b) NBAC shall identify broad principles to govern the ethical conduct of research, citing specific
projects only as illustrations for such principles.

c) NBAC shall not be responsible for the review and approval of specific projects.

d) In addition to responding to requests for advice and recommendations from the National Science
and Technology Council, NBAC also may accept suggestions of issues for consideration from
both the Congress and the public. NBAC also may identify other bioethical issues for the
purpose of providing advice and recommendations, subject to the approval of the National
Science and Technology Council.

National Bioethics Advisory Commission
6100 Executive Boulevard, Suite 5B01, Rockville, Maryland 20892-7508
Telephone: 301-402-4242 • Fax: 301-480-6900 • Website:
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Mission of the National Council on Disability

Overview and Purpose:
The National Council on Disability (NCD) is an independent federal agency with 15 members appointed by the President of the United States and confirmed by the U.S. Senate. The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or significance of the disability, and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
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SOURCE: Brain Injury Network

Jan 11, 2011 11:11 ET

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
(Clicks: 188; Comments: 0; Listing added: Jan 11, 2011) Listing Details Report Broken  Listing
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