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TRaumaticBrain Injury Traumatic brain injury is an insult to the brain, not of a degenerative or congenital nature but caused by an external physical force, that may produce a diminished or altered state of consciousness, which results in an impairment of cognitive abilities or physical functioning. It can also result in the disturbance of behavioral or emotional functioning. These impairments may be either temporary or permanent and cause partial or total functional disability or psychosocial maladjustment. www.biausa.org
Causes of TBI
A traumatic brain injury occurs when an outside force impacts the head hard enough to cause the brain to move within the skull or if the force causes the skull to break and directly hurts the brain.
A direct blow to the head can be great enough to injure the brain inside the skull. A direct force to the head can also break the skull and directly hurt the brain. This type of injury can occur from motor vehicle crashes, firearms, falls, sports, and physical violence, such as hitting or striking with an object.
A rapid acceleration and deceleration of the head can force the brain to move back and forth across the inside of the skull. The stress from the rapid movements pulls apart nerve fibers and causes damage to brain tissue. This type of injury often occurs as a result of motor vehicle crashes and physical violence, such as Shaken Baby Syndrome.
Acquired Brain Injury An acquired brain injury commonly results in a change in neuronal activity, which effects the physical integrity, the metabolic activity, or the functional ability of the cell. An acquired brain injury may result in mild, moderate, or severe impairments in one or more areas, including cognition, speech-language communication; memory; attention and concentration; reasoning; abstract thinking; physical functions; psychosocial behavior; and information processing. www.biausa.org
Causes of ABI Acquired brain injury takes place at the cellular level within the brain. Therefore, injury from acquired brain injury can effect cells throughout the entire brain, instead of just in specific areas as with traumatic brain injury.An acquired brain injury is an injury to the brain, which is not hereditary, congenital, degenerative, or induced by birth trauma. An acquired brain injury is an injury to the brain that has occurred after birth. Causes of acquired brain injury can include, but are not limited to: Airway obstructionNear-drowning, throat swelling, chokingElectrical shock or lightening strikeTrauma to the head and/or neckHeart attack, strokeInfectious disease, intracranial tumorsMeningitis, certain venereal diseases, AIDS, insect-carried diseases, Toxic exposure www.biausa.org
The leading causes of TBI are: http://www.cdc.gov/traumaticbraininjury/causes.html
Other TBI Facts Blasts are a leading cause of TBI for active duty military personnel in war zones. Males are about 1.5 times as likely as females to sustain a TBI. The two age groups at highest risk for TBI are 0 to 4 year olds and 15 to 19 year olds. Certain military duties increase the risk of sustaining a TBI. African Americans have the highest death rate from TBI. http://www.cdc.gov/traumaticbraininjury/causes.html
Long term consequences of TBI The Centers for Disease Control and Prevention estimates that at least 3.17 Million Americans currently have a long-term or lifelong need for help to perform activities of daily living as a result of a TBI.According to one study, about 40% of those hospitalized with a TBI had at least one unmet need for services one year after their injury. The most frequent unmet needs were: Improving memory and problem solving; Managing stress and emotional upsets; Controlling one's temper; and Improving one's job skills. TBI can cause a wide range of functional changes affecting thinking, language, learning, emotions, behavior, and/or sensation. It can also cause epilepsy and increase the risk for conditions such as Alzheimer's disease, Parkinson's disease, and other brain disorders that become more prevalent with age http://www.biausa.org/elements/pdfs/awareness/biaa_tbi_sheet.pdf
Legislation that Impacts the BI Community
TBI Act of 1996
TBI Act of 1996 (Federal TBI Program) The TBI Act of 1996 launched an effort to conduct expanded studies and to establish innovative programs for TBI. The Act gave the Health Resources and Services Administration (HRSA) authority to establish a grant program for States to assist it in addressing the needs of individuals with TBI and their families. The TBI Act also delegated responsibilities in research to the National Institutes of Health, and prevention and surveillance to the Centers for Disease Control and (Traumatic Brain Injury Program, 2009).
The Traumatic Brain Injury Act of 2008 (P.L. 110-206) reauthorized the programs of the TBI Act of 1996 (Traumatic Brain Injury Program, 2009).
The 2000 Amendments (PL 106-310 – Title XIII of the Children’s Health Act) recognized the importance of protection and advocacy (P&A) services for individuals with TBI and their families by authorizing HRSA to make grants to Federally mandated State P&A Systems (Traumatic Brain Injury Program, 2009).
the National Defense Authorization Act for FY 2010 Subtitle D – Wounded Warrior Matters-Report on rehabilitation treatment strategies for service members with traumatic brain injury. The bill includes a provision that would require the Secretary of Defense to submit to Congress a report setting forth the evidence to be required from a long-term integrated study on treatment strategies for cognitive rehabilitation for service members who have sustained traumatic brain injuries to determine how receipt of such rehabilitative therapies could be reimbursed as a health care benefit (Senate Armed Services Committee summary, 2010).
Title I of the Americans with Disabilities Act of 1990 This Act prohibited private employers, state and local governments, employment agencies and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, and other terms, conditions, and privileges of employment. The ADA covers employers with 15 or more employees, including state and local governments. It also applies to employment agencies and to labor organizations. The ADA’s nondiscrimination standards also apply to federal sector employees under section 501 of the Rehabilitation Act, as amended, and its implementing rules (Facts About the Americans with Disabilities Act, 2008). http://www.eeoc.gov/facts/fs-ada.html
Title I of the ADA: Medical Examinations and Inquiries Employers may not ask job applicants about the existence, nature, or severity of a disability. Applicants may be asked about their ability to perform specific job functions. A job offer may be conditioned on the results of a medical examination, but only if the examination is required for all entering employees in similar jobs. Medical examinations of employees must be job related and consistent with the employer’s business needs (Facts About the Americans with Disabilities Act, 2008). http://www.eeoc.gov/facts/fs-ada.html
The Protecting Student Athletes from Concussion Act of 2010 The National Athletic TrainersAssociation (NATA), a not-for-profit organization representing 33,000 members of the athletic training profession, endorsed the Protecting Student Athletes from Concussion Act of 2010, which was introduced today by the U.S. House Education and Labor Committee. The Protecting Student Athletes from Concussion Act of 2010 would require school districts to implement management plans to ensure students are informed about concussions and given the support they need to recover. The legislation is specifically designed to increase awareness of concussion signs, symptoms and risks and improve concussion safety and management for student athletes. NATA looks forward to working with Congress for the swift passage and implementation of this legislation (Special Report: NATA Champions Proposed Concussion Act of 2010, 2010).
The Individuals with Disabilities Education Act (IDEA) IDEA is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B (Building the Legacy: IDEA 2004, 2004). http://idea.ed.gov/
Organizations that impact the BI Community
Brain Injury Association (BIA)- organization specifically for individuals with a brain injury or a neurological dysfunction. BIA offers basic information, such as legal advice, support groups pertaining to brain injury along with testimonials that individuals share in video format. BIA also is a national organization. (www.biausa.org)
Traumatic Head and Spinal Cord Injury Trust Fund (TH/SCI)- This trust is for those who suffer from a brain or spinal cord injury. This program is funded from vehicle violations, DUIs, reckless operation, and speeding. (www.dss.state.la.us/thsci) Office for Citizens with Developmental Disabilities (OCDD) is a branch of the Department of Health and Human Services (DHH) to determine if eligibility requirements for individuals with developmental disability. According OCDD, an individual with a brain injury is considered to have a developmental disability which entitles those individuals to services. (www.dhh.state.la.us)
National Data and Statistical Center for Traumatic Brain Injury- this organization has information pertaining to TBI along with model systems of care and conducts research for evidenced-based TBI rehabilitation interventions. (www.tbindsc.org) United States Department of Health and Human Services- this organization offers preventative ways to avoid brain injury and how brain injury affects decision making skills and helpful facts concerning Brain Injury. (www.hhs.gov)
National Institute of Neurological Disorders and Stroke- offers treatments, medical advice, newsletters, and programs that offer research literature. (www.ninds.nih.gov/disorders/tbi/tbi.htm) The Brain Injury Recovery Network- is a unique website that offers support to not only BI survivors but loved ones as well. The website offers legal advice, stories, equipment, and Brain Training games. (www.tbirecovery.org)
Brain Injury Programs in other States
BRAIN INJURY SERVICES Since 1989, BIS has helped individuals in Northern Virginia and outlying suburbs. State and local governments, grants and donations provide funds for case management. There are a limited number of slots for services and admissions are based on a priority of need and least resources. http://www.braininjurysvcs.org/aboutus_aboutus.asp
Children’s services The Case Manager identifies and coordinates assessments and treatment as well as offers support with IEP meetings and school re-entry. Assists the families to utilize these systems, advocate and receive the services they need and desire. Provides education to other service providers and they offer ongoing education for teachers and others in the school system. http://www.braininjurysvcs.org/programs_pedscasemanagement.asp
ADAPT ClubhouseandWestwood Clubhouse The Clubhouses are places for people with Brain Injuries. The primary purpose of these programs is to assist individuals with brain injuries to lead productive lives. Members come together in a positive and supportive environment fostering productivity. The focus is person centered and based on strengths, thus fostering increased self-esteem, vocational skills, and confidence. http://www.braininjurysvcs.org/programs_ADAPT.asp http://www.braininjurysvcs.org/programs_westwood.asp
BIS’ Volunteer Program Developed initially out of funding provided by the State Legislature through a Budget Amendment and The Philip Graham Fund. It was established to develop a unique model that focuses on individualized services that contribute to the success of our consumers in finding meaningful productive activities in the communities of their choice. The goal is to place all interested consumers in fulfilling volunteer jobs in order to maintain a productive focus and to give back to their communities. Often this is a stepping-stone to returning to work. http://www.braininjurysvcs.org/programs_pals.asp
Brain Injury Servicesof SWVA Fran and Greg Rooker established Brain Injury Services of SWVA, a 501(c) (3) non-profit organization. This program provides community-based case management (at no cost)to adult survivors and their families who reside in the Brain Injury Services of SWVA service area. Program also includes advocating for and creating community resources needed to assist survivors in maximizing recovery, optimizing employment or service potential, and reintegrating into their families and communities. Additional services either at no cost or on a sliding scale, include independent living skills training, respite care, specialized clubhouse programs and social skills training. Helping approximately 500 individuals in the region manage the challenges of living with a brain injury. http://www.bisswva.org/history.html
PALS This program provides opportunities for survivors of brain injury to connect with new people and socialize in the community. This program offers volunteers the opportunity to work with a consumer one on one to accomplish a goal as decided by the consumer. Case Managers help consumers identify goals that work within a six month time period. Volunteers meet with consumers every week or every other week taking small steps toward the six month goal. Goals include learning healthy cooking, taking long walks, learning how to kayak, etc. http://www.bisswva.org/pals.html
Community Support Service The program provides intensive, one-to-one training on issues related to activities of daily living, increased independence, and community integration. Areas which are frequently the focus of Community Support Service Training include: Communication and Social Skills, Compensatory Strategies, Financial Management, Household Management, Organization and Scheduling, Personal / Self Care, Use of Technology as an Assistive Device http://www.bisswva.org/lifeskills.html
The Opportunity Project The Opportunity Project is a “clubhouse model,” a place where people with brain injuries can get counseling, job training, and socialize with other people with similar injuries. Members help run the organization and have membership for life. The Clubhouse Program is a supportive network of members who participate in a work-oriented environment where they develop and engage in practical, functional community work and living skills. The program is designed to address the vocational, cognitive, behavioral, social and emotional difficulties which individuals affected by brain injury frequently experience as they try to resume their lives. Members and staff work together to plan and carry out the wide variety of jobs, tasks, and functions needed each day to operate the Clubhouse.
The Communication Unit produces all correspondence, determines the editorial content of the member newsletter, creates the monthly calendar, special event invitations and flyers. Members manage our phone system, faxing, copying as well as monitor our email and update our website.
The Resource Unit offers fundamental skill development in reading, writing and cognitive training are offered as well as, community education and brain injury awareness.
The Vocational Unit Provides Work Evaluation, Work Adjustment Training and Supported Employment programs. Opportunity Project is affiliated with local county offices of The Division of Vocational Rehabilitation (DVR) and provides a 25 day on site and community evaluation and 90 day work adjustment training to individuals referred by the DVR as well as to any interested members.
Individual, Group Counseling and Peer Support Groups
There are also educational groups focused on nutrition, substance abuse, hygiene and other relevant topics. Special adjustment sessions focus on many issues, in particular the issue of “acceptance vs. denial” of the life changes that occur after brain injury.
The speakers have been taught to combine firsthand experience of living with a brain injury and general knowledge of statistical information to create and deliver highly inspiring, motivational and informative presentations.
Brain Injury Association of Minnesota In 1984, a small group of families and providers came together to advocate for services for persons with brain injury and their families. Case managers provides case management services for individuals who are on a Traumatic Brain Injury (TBI) or Community Alternative for Disabled Individuals (CADI) Waiver and have a brain injury diagnosis. The Waiver funds can be used to pay for services and supports such as independent living skills, homemaking, personal care services, supported employment, transportation, behavioral services, or day program fees.
Resource Facilitation A free, statewide telephone service available that provides persons affected by brain injury with support in transitioning back to their family life, work, school and the community. How does it work?The best way is that upon discharge from the hospital, individuals are given information about the free service and the option to sign an authorization form. Resource Facilitation is funded through a contract with the Minnesota Department of Health, making it possible for every hospital in the state to offer this as a free service to their patients affected by brain injury
Key People And Capacity Development
Key People OCDD - The Office for Citizens with Developmental Disabilities Julia Kenny, Assistant Secretary DHH- Department of Health and Hospitals Bruce Greenstein, Secretary BIALA- The Brain Injury Alliance of Louisiana LaVondra Dobbs, Executive Director & Janet Clark, Chairman DDC- The Louisiana Developmental Disabilities Council SandeeWinchell, Executive Director FHF – Families Helping Families Jamie S. Tindle, Executive Director
GODA – The Governor’s Office for Disability Affairs Governor's Advisory Council on Disability Affairs (GACDA) LaCAN- Louisiana Citizens for Action Now Rodney B. Hastings, Region 2 Team Leader LRS – Louisiana Rehabilitation Services Roseland Starks, Director Louisiana Assistive Technology Assistance Network Julie Nesbit, ATP, President & CEO Resource: http://www.advocacyla.org/index.php/related-groups.html
Capacity development and social advocacy can bring about change within the Brain Injury population by building on the strengths of the Brain Injury support groups and programs that already exist. Capacity development within the Brain Injury community would first need to promote awareness of the problem within the community. One example may be to show statistics of how many people have suffered a brain injury within the community and what the chance of a person suffering a brain injury in their lifetime is. Gaining more members within your organization or group, especially those who have a Brain Injury and caregivers/loved ones who have a strong desire to be involved, is important so that the community will know the needs that are not being met. These are the very people who will decide where the support group, program, or organization will be directed.
It is also important to include people of all ethnic backgrounds to reach others who may need to be involved in the program. A Brain Injury can happen to anyone no matter what religion, race, age, or sex a person is. It is important that the group/ program has self-determination and be able to direct itself where it wants to go. Having too many political people involved may not be helpful to the program because the politics can direct a program in a direction where the participants needs may not be addressed. Resource: Rothman, J., Erlich, J.L., & Tropman, John E. 2008. “Capacity Development and the Building of Community”. Strategies of Community Intervention.