Librarian's Picks: Traumatic Brain Injury.
'Quick picks' from librarians at the National Rehabilitation Information Center.
According to the Centers for Disease Control and Prevention "Each year more than 80,000 Americans survive a hospitalization for traumatic brain injury (TBI) but are discharged with TBI-related disabilities. 5.3 million Americans are living today with a TBI-related disability." People living with these disabilities may face neurological difficulties, memory loss, depression and other psychiatric disabilities, aphasia, and communication disabilities. The agencies and organizations listed in this guide can help you and your family on the road to recovery.
For more resources, visit the Ready Reference page for Resources on Specific Disabilities or search the Knowledgebase. You may also download the brochure in PDF format at the bottom of this page. Disponible en español.
Information and Support
Brain Injury Association of America (BIAA)
Toll Free: 800/444-6443 (V) (Family Helpline)
BIAA is a nonprofit, national advocacy organization that works to increase public awareness of brain injury, provide education and information about TBI and promote linkage to support groups and local resources through a toll-free Family Helpline.
Brain Injury Resource Center
Phone: 206/621-8558 (V)
Provides callers with information on living with brain injury, including consultations and referrals to health care, legal professionals, and support groups. The website provides extensive information and resources on a wide variety of topics pertaining to brain injury.
Model Systems Knowledge Translation Center (MSKTC)
MSKTC summarizes research, identifies health information needs, and develops information materials for individuals living with traumatic brain injury (TBI) and people who support them. The evidence-based materials are available in a variety of platforms: consumer oriented PDF factsheets; slideshows on topics related to living with a TBI; and the hot topic module consists of resources to help individuals with TBI and their partners navigate relationships. MSKTC also publishes the factsheet "Facts About the Vegetative and Minimally Conscious States After Severe Brain Injury", msktc.org/tbi/factsheets/Vegetative-And-Minimally-Conscious-States-After-Severe-Brain-Injury.
Brain Trauma Foundation (BTF)
The mission of BTF is to improve TBI patient outcomes worldwide by developing best practice guidelines, conducting clinical research, and educating medical professionals and consumers. BTF has developed scientific, evidence-based diagnostic and treatment guidelines to control secondary damage to the injured brain. Visitors to the website can view videos about coma, the coma checklist, and the BTF coma guidelines.
The National Resource Center For Traumatic Brain Injury (NRCTBI)
The NRCTBI develops a wide variety of assessment tools, intervention programs, and training programs. The web site contains a catalog of materials available for survivors, families, and professionals; "Chat with Pat" column that answers personal questions with compassion and practical advice; articles about recovering from a TBI; and related links.
Family Caregiver Alliance (FCA)
Toll Free: 800/445-8106
FCA offers programs at national, state, and local levels to support and sustain caregivers. Its goals include public advocacy for those with financial and emotional distress, direct services to family caregivers (in California), and the national distribution of information on caregiving and the care of people with chronic disabling conditions.
Caregiver Action Network (CAN)
Non-profit organization providing education, peer support, and resources to family caregivers nationwide. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer's disease.
Rehabilitation and Therapy
NRH Field Guide to Choosing a High Quality Medical Rehabilitation Program
This guide was developed by the National Rehabilitation Hospital and Boston University to help patients and their families evaluate rehabiltation facilities and choose the right program to fit their needs. It includes checklists, questions to ask, a glossary of terms, and information on insurance and Medicare/Medicaid. The guide is free to download or order from NARIC.
American Physical Therapy Association (APTA)
Toll Free: 800/999-2782; 703/683-6748
APTA is the main professional body for physical therapists in the US. Their website includes a Find a PT service. Be sure to check out their Choosing your Physical Therapists guidelines moveforwardpt.com/Resources/Choose.aspx#.VLaF4U10zoo.
American Occupational Therapy Association (AOTA)
Toll Free: 800/792-2682 (Members)
Phone: 301/652-6611 (Non-members)
AOTA is the national professional association representing the interests and concerns of occupational therapy practitioners and students. While they do not have a member directory that is searchable by the public, they do have a database to find a Driver Rehabilitation Specialist myaota.aota.org/driver_search/index.aspx.
American Academy of Physical Medicine and Rehabilitation (AAPM&R)
Find a PM&R physician: members.aapmr.org/AAPMR/AAPMR_FINDER.aspx.
Each year US News and World Report issues rankings for top US hospitals by speciality, including rehabilitation. For information on the selection and ranking methodology, see health.usnews.com/health-news/best-hospitals/articles/2014/07/15/faq-how-we-ranked-the-best-hospitals-2014-15?int=a01008.
Commission on Accreditation of Rehabilitation Facilities (CARF)
Toll Free: 888/281-6531; 520/495-7080 (TTY)
CARF International is an independent, nonprofit accreditor of human service providers in the areas of aging services, behavioral health, child and youth services, DMEPOS, employment and commuity services, and medical rehabilitation. Use their search page to find inpatient and outpatient medical rehabilitation centers, brain injury centers, and other facilities and providers.
National Easter Seal Society
Toll Free: 800/221-6827
Provides multiple medical rehabilitation services including physical, occupational, and seech therapy, adult day care, and vocational rehabilitation. Call for information on offices in your area. Web site includes program information listed by city and state.
National Association for Home Care and Hospice (NAHC)
An advocacy organization that assists patients seeking in-home care, home healthcare providers, medical professionals, and others working to increase access to in-home care, rather than institutionalization. Website has information on how to select the right home care provider, including a checklist of questions to ask. Find a provider through the Home Care/Hospice Agency Locator: agencylocator.nahc.org.
Toll Free: 800/227-0216 (V); 703/992-8313 (TTY) Se habla español.
Provides computerized searches for assistive devices, products, and equipment. Searches include distributor information and product descriptions. Fact sheets and information on catalogs are also available.
An information resource providing up-to-date, thorough information on AT, adaptive environments, and community resources. The database is both browsable and keyword searchable.
- Traumatic Brain Injury Survival Guide
- TBI Fact Sheet from NICHCY
- TBI information page from NINDS
- Heads Up: Preventing Brain Injuries
cdc.gov/headsup/basics/concussion_prevention.html (En inglés).
March is Brain Injury Awareness Month!