Librarian's Picks: Stroke.

'Quick picks' from librarians at the National Rehabilitation Information Center.

According to the National Institutes of Health "Stroke is a leading cause of serious, long-term adult disability. Four million Americans are living with the effects of stroke. The length of time to recover from a stroke depends on its severity. Fifty to 70 percent of stroke survivors regain functional independence, but 15 to 30 percent are permanently disabled." The organizations and agencies listed in this guide can help you and your family find the resources, rehabilitation, and support you need.

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

National Stroke Association
Toll Free: 800/STROKES (787-6537)
stroke.org.
Serves as a national education, information, and resource service for stroke survivors, their families, and professionals. Provides listings of stroke rehabilitation facilities across the country. Web site includes a newsletter, facts and figures, and other Internet resources. StrokeSmart magazine is NSA's free publication for the stroke community. The StrokeSmart Resource Directory is a database that is searchable by product/service catgory, state, or company name at strokesmart.org.

The American Stroke Association, a division of The American Heart Association
Toll Free: 888/4-STROKE (478-7653)
strokeassociation.org.
AHA funds scientific research, helps people  better understand and avoid stroke, encourages  government support, guides healthcare  professionals and provides information to enhance  the quality of life for stroke survivors.  Website has information about stroke, the warning signs, life after stroke, an online support community, searchable database to find stroke care near a specific area, and their free quarterly publication, Stroke Connection, only available in digital format.

National Institute of Neurological Disorders and Stroke (NINDS)
Phone: 800/352-9424 (V)
ninds.nih.gov.
The mission of NINDS is to seek fundamental  knowledge about the brain and nervous system  and to use that knowledge to reduce the  burden of neurological disease through research, education, and the dissemination of  information. Website provides information and  resource pages on disorders/diseases listed  from A to Z. Visit the stroke information page at ninds.nih.gov/disorders/stroke/stroke.htm.

The Internet Stroke Center
strokecenter.org.
Non-profit educational service supported by NIH and NINDS. Website provides current, professional, unbiased information about stroke, divided in three sections: patients and families, professionals, and education.

The Family Caregiver Alliance (FCA)
Phone: 800/445-8106
caregiver.org.
Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. FCA now 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)
Phone:202/772-5050
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

National Aphasia Association
Toll Free: 800/922-4622
aphasia.org.
Promotes public awareness by providing information and publications to individuals with aphasia, their family members, and professionals. Web site features a pen pal service, an email address exchange, newsletter, and stroke and aphasia support groups listed by state.

The National Easter Seal Society
Toll Free: 800/221-6827
Provides medical rehabilitation services including physical and/or occupational therapy and other therapies that help people learn the skills they need to live, learn, work, and play in their communities. There are over 400 affiliates nationwide. Contact the national office for details on services available in your area. Web site includes program information and an index to services by city and state.

American Speech-Language-Hearing Association (ASHA) ProSearch Database
Toll Free: 800/638-8255
asha.org/findpro.
The American Speech-Language- Hearing Association (ASHA) is the national professional, scientific, and credentialing association for members and affiliates who are audiologists; speech-language pathologists; speech, language, and hearing scientists; audiology and speech-language pathology support personnel; and students.

American Physical Therapy Association (APTA)
Toll Free: 800/999-APTA (2782); 703/684-2782
apta.org.
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 Therapist guidelines moveforwardpt.com/Resources/Choose.aspx#.VLaF4U10zoo.

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 community services, and medical rehabilitation. Use their search page to find inpatient and out-patient medical rehabilitation centers, brain injury centers, and other facilities and providers.
 
US News and World Report Top Hospitals
health.usnews.com/best-hospitals.
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.
 
Centers for Medicare & Medicaid Services (CMS)
medicare.gov.
Medicare offers search tools to locate a physician, find suppliers of medical equipment, and compare hospitals and nursing homes in your area.
 
NRH Field Guide to Choosing a High Quality Medical Rehabilitation Program
This guide was developed by National Rehabilitation Hospital and Boston University to help patients and their families evaluate rehabilitation 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.

Assistive Technology

ABLEDATA
Toll Free: 800/227-0216 (V); 703/992-8313 (TTY)
abledata.com.
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.

Assistivetech.net
An information resource providing up-to-date, thorough information on AT, adaptive environments, and community resources. The database is both browseable and keyword searchable.

 

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