Head Injury: A NARIC Resource Guide
             for People with Head Injuries and their Families.
                                      
   From the National Rehabilitation Information Center
   March 1994
   
   Copyright © 1994 KRA Corporation
   
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Table of Contents

   [1]Introduction
   [2]National Resources
   [3]Independent Living Centers
   [4]NIDRR-Funded Projects
   [5]Other Government-Funded Head Injury Projects
   [6]Periodicals Concerning Head Injury
   [7]Documents Concerning Head Injury
   [8]About this Document
     _________________________________________________________________
                                      
  Introduction
  
   This guide contains information that persons with head injury, their
   families, and friends can use to adjust to life after head injury. It
   includes resources to enhance one's knowledge of head injury, coping
   and caregiving skills, and the general quality of life for the person
   with a head injury.
   
   The resources listed are in a variety of forms, including telephone
   hotlines, magazines, newsletters, pamphlets, booklets, and books.
   Resources were selected based on their usefulness to people without
   medical backgrounds and availability through clearinghouses,
   libraries, or publishers.
   
   For user convenience, most of the listings include a phone number. In
   some cases the caller will be routed through a system, which may put
   the caller on hold, or request the caller to explain the need or
   question more than once. Patience and persistence will pay off. Some
   of the organizations have answering machines that will record messages
   when staff members are not available.
   
  National Resources
  
   The organizations listed below provide resources in one or more of the
   following ways: they answer requests for information over the phone;
   they direct persons with head injury and their families to services
   and support groups; or they distribute printed publications such as
   brochures, booklets, or books. Some are membership organizations, some
   are not. All hours listed are for Monday to Friday.
   
   A Chance to Grow. 3820 Emerson Avenue North, Minneapolis, MN 55412.
   612/521-2266. Legal information hotline: 612/339-1290. Hours: 8 a.m.
   to 5:30 p.m. Central time.
   A self-help group for parents of people with brain injury. Maintains a
   library on head injury, which includes legal information. Operates the
   Sandler rehabilitation program, which uses physical movement, an
   exercise regimen, spinal fluid regulation, and proper nutrition to
   improve the physical and cognitive skills of head injury survivors.
   Publishes a newsletter called Growing Times (quarterly).
   
   Coma Recovery Association. 377 Jerusalem Avenue, Hempstead, NY 11550.
   516/486-2847. Hours: 10 a.m. to 3 p.m. Eastern time.
   Provides information relating to coma, including information on
   treatment techniques. Offers legal consulting services.
   
   The Family Caregiver Alliance (FCA). 425 Bush Street, Suite 500, San
   Francisco, CA 94108. 415/434-3388; 800/445-8106 (California only).
   Hours: 9 a.m. to 5 p.m. Pacific time.
   The Family Caregiver Alliance (FCA) is a nonprofit organization
   founded to assist families of adults with chronic or progressive brain
   disorders (stroke, head injury, Alzheimer's disease, etc.). Its goals
   include public advocacy for those with financial and emotional
   distress and the national distribution of information on the care of
   people with brain injuries. Information for families is available on
   adult brain disorders. Available publications include 23 fact sheets
   on brain disorders and caregiving issues. A publications list is
   available upon request.
   
   National Head Injury Foundation, Inc. (NHIF). 1776 Massachusetts
   Avenue NW, Suite 100, Washington, DC 20036. 800/444-NHIF;
   202/296-6443. 202/296-8850 (fax). Hours: 9 a.m. to 5 p.m. Eastern
   time.
   NHIF is the leading, national, advocacy and support organization for
   persons with head injuries and their families. NHIF is actively
   involved in legislation at the federal and state level. NHIF offers a
   toll-free "Family Helpline," as well as brochures describing head
   injury; prevention programs; a national directory of resources for
   persons with head injury and their families; national conferences for
   rehabilitation professionals, trial lawyers, and people with head
   injuries and their families; and a catalog of educational materials.
   NHIF publishes a national newsletter as well as films and videos.
   These products are available through Information and Resources at
   NHIF.
   
   The National Institute of Neurological Disorders and Stroke (NINDS).
   Office of Information and Scientific Health Reports, 9000 Rockville
   Pike, Building 31, Room 8A-16, Bethesda, MD 20892. 800/352-9424;
   301/496-5751. Contact: Information Specialist. Hours: 9 a.m. to 4:30
   p.m. Eastern time.
   This office, part of the National Institutes of Health, provides
   pamphlets written for nonprofessionals about various neurological
   disorders, including brain injury. One such publication is Head
   Injury: Hope Through Research (37 pages, free). They also publish fact
   sheets, special reports, and other documents. A list of free
   publications is available.
   
   The Perspectives Network (TPN). 7205 Pullman Place, Mobile, AL
   36695-4321. 800/685-6302; 205/639-5037. 205/639-5037 (fax). Hours: 10
   a.m. to 6 p.m. Eastern time.
   The Perspectives Network is a nonprofit, service organization which
   provides various forums and opportunities wherein persons with brain
   injury, family members and friends, professionals, and community
   members are encouraged to discuss the issues relating to treatment,
   recovery, and reentry. TPN also provides peer communication networks
   for adults, teenagers, youth, and parents with brain injury, as well
   as spouses, children, parents, and siblings. These networks may be
   joined by writing to TPN, Attention: Networks (specifying the
   appropriate network).
   TPN publishes a quarterly magazine with an international circulation.
   TPN also produces the following brochures: Brain Injury: Prevention IS
   Worth a Pound of Cure but Sometimes It Happens Anyway! and From Bump
   on the Head to Coma: We Are All Interlinked (available by sending a
   stamped, self-addressed envelope to TPN, Attention: Fact Brochures).
   
   Research and Training Center on Rehabilitation and Childhood Trauma.
   Tufts University, New England Medical Center, Department of
   Rehabilitation Medicine, 750 Washington Street, 75K-R, Boston, MA
   02111. 617/956-5036. 617/956-5513 (fax). Hours: 9 a.m. to 5 p.m.
   Eastern time.
   The Research and Training Center on Rehabilitation and Childhood
   Trauma, which is funded by the National Institute on Disabilities and
   Rehabilitation Research (NIDRR), conducts research to increase
   knowledge about the causes, treatment, and outcomes of injuries among
   children. The project also includes a training and dissemination
   program to make its information available to those most directly
   affected by childhood trauma_children, their families or guardians,
   and the providers of services. A special program is dedicated to
   addressing the unique needs of minority populations. Emphasis will be
   given to developing informational packages, training programs, and
   effective interventions that can be replicated nationally. Journal
   articles, a directory, a newsletter, conference proceedings, books,
   monographs, curricula, and audiovisuals are produced by the center.
   The RTC also provides information and referral services, develops
   curricula/training materials, conducts conferences and surveys, and
   provides technical assistance.
   
   Well Spouse Foundation (WSF). P.O. Box 801, New York, NY 10023.
   212/724-7209. 212/724-5209 (fax). Hours: 10 a.m. to 5 p.m. Eastern
   time.
   The Well Spouse Foundation is a nationwide organization that provides
   support for the husbands, wives, and partners of people who are
   chronically ill or have disabilities. Regional support groups, a
   newsletter, and round robin letters help members cope with the
   difficulties they face as spousal caregivers.
   
  Independent Living Centers
  
   Independent living centers are local organizations administered and
   staffed by people with disabilities. They provide peer counseling,
   advocacy, and information about local services. The name, address, and
   phone number of the closest independent living center is available
   through a NARIC Information Specialist at 800/346-2742 (V),
   301/588-9284 (V), or 301/495-5626 (TT); 301/587-1967 (fax).
   
  NIDRR-Funded Projects
  
   The National Institute on Disability and Rehabilitation Research
   (NIDRR) contributes to the independence of persons of all ages who
   have disabilities by seeking improved systems, products, and practices
   in the rehabilitation process. NIDRR funds research and training
   centers (RTCs), rehabilitation engineering research centers (RERCs),
   field-initiated research, research and demonstration projects,
   research fellowships, and dissemination and utilization grants. Many
   of the projects are of interest to persons with head injury and their
   families.
   
   As a repository for their projects' newsletters, research results, and
   final reports, NARIC can provide more information about the projects
   currently funded by NIDRR.
   
  Other Government-Funded Head Injury Projects
  
   The Rehabilitation Services Administration (RSA) fund other projects
   that may be of interest to persons with head injury and their
   families. More information about the services of these projects can be
   obtained from NARIC.
   
  Periodicals Concerning Head Injury
  
   The following publications may be of interest to persons with head
   injury and their families. All prices listed are for individuals
   living in the United States.
   
   Cognitive Rehabilitation. NeuroScience Publishers, 6555 Carrollton
   Avenue, Indianapolis, IN 46220. 317/257-9672.
   A publication for therapists, families, and patients, designed to
   provide information relevant to the rehabilitation of impairment
   resulting from brain injury; includes techniques, programs, and new
   methods. Published six times per year. Cost: $35 per year.
   
   Exceptional Parent. Psych-Ed Corporation, 1170 Commonwealth Avenue,
   Boston, MA 02134-4646. 617/730-5800. New subscriptions: 800/247-8080.
   Customer service: 800/562-1973.
   Publication for parents of children with disabilities. Articles
   provide ideas, guidance, personal experiences, and practical
   information. Published eight times a year. Cost: $18 per year
   (individuals); $24 per year (parents); $70 per year (institution).
   
   NHIF Newsletter. National Head Injury Foundation, 1776 Massachusetts
   Avenue NW, Suite 1100, Washington, DC 20036. 202/296-6443.
   Contains news and articles for families and professionals concerned
   with head injury. Information on NHIF activities are also included.
   Quarterly. Cost: $35 per year (individual membership); $200 (corporate
   membership).
   
  Documents Concerning Head Injury
  
   The NARIC library currently contains more than 1,400 documents
   pertaining to head injuries. The following books and journal articles
   have been singled out as being useful for people with head injury and
   their families.
   
   Copyright law prevents NARIC from photocopying some documents; some
   are found in a local library, or the local library may be able to get
   them through the interlibrary loan program. Purchasing information has
   been provided as well; many of the books are available by special
   order from book stores_others are available only from the publisher.
   
   Lash. M. (1990). When Your Child is Seriously Injured in an Accident.
   Boston: Tufts University/New England Medical School, RTC in
   Rehabilitation and Childhood Trauma, in collaboration with the Kiwanis
   Pediatric Trauma Institute. Available from the RTC in Rehabilitation
   and Childhood Trauma, Department of Rehabilitation Medicine, Tufts-New
   England Medical Center, 750 Washington Street, #75K-R, Boston, MA
   02111. 800/535-1910; 617/956-5036. Contact: B. Saunders in the
   publications department. Cost: $4.50.
   This booklet offers support and assistance for families of injured
   children, including information about the hospital stay, loss and what
   it means for the parent and child, helping brothers and sisters,
   getting help and coping, and planning for discharge from the hospital.
   Also included is a Parents' Bill of Rights, samples of a family log or
   notebook, resources, and suggested reading.
   
   Anderson, J., & Parente, F. (1985). Training Family Members to Work
   with the Head Injured Patient. Cognitive Rehabilitation, (3)4, 12-15.
   NARIC Accession Number: XJ4632.
   Describes exercises that families of people with head injuries can use
   to assist in a person's cognitive rehabilitation. The exercises
   included are designed to increase the person's attention span and to
   help the person remember information by organizing it for better
   retention. Topics discussed include verbal mediation, mnemonics, and
   imagery. Discusses the relationship between memory and attention,
   types of organizational strategies, methods to remember disassociated
   information using mnemonics, and teaching the concept of mental
   imagery as a precursor to memory training. Includes references.
   
   Angle, Deborah K., & Buxton Julie M. (1991). Community Living Skills
   Workbook for the Head Injured Adult. Gaithersburg, MD: Aspen
   Publishers, Inc. Available from: Aspen Publishers, Inc. 200 Orchard
   Ridge Drive, Gaithersburg, MD 20878. 800/638-8437 (orders only);
   301/417-7500. Cost: $83.
   Presents a manual of treatment activities for persons with head
   injury. Eight modules are presented with the first module describing
   the role occupational therapy takes and the remaining modules
   outlining specific treatment activities that address functional skill
   areas. Areas covered by the modules include the role of the
   occupational therapist, family education, home management, money
   management, interpersonal skills, leisure, transportation, and
   prevocational and vocational skills.
   
   Aronow, H. U., Desimone, B. S., & Wood, R. L. (1987). Traumatic Brain
   Injury: Discharge and Beyond: The Discharge and Recovery Process.
   Continuing Care, (6)3, 26-29. NARIC Accession Number: XJ7526.
   Discusses factors involved in rehabilitation of persons with head
   injury, focusing on the person's reactions following discharge, early
   emotional and behavioral obstacles, issues surrounding early discharge
   to the community versus transitional programs, factors that influence
   the speed of recovery, and effects of rehabilitation. Describes the
   benefits of early rehabilitation.
   
   DeBoskey, D. S., Hecht, J. S., & Calub, C. J. (1991). Educating
   Families of the Head Injured: A Guide to Medical, Cognitive, and
   Social Issues. Gaithersburg, MD: Aspen Publishers, Inc. Available
   from: Aspen Publishers, Inc., 200 Orchard Ridge Drive, Gaithersburg,
   MD 20878. 800/638-8437 (orders only); 301/417-7500. Cost: $70 (plus
   postage).
   While the cost of this document may be prohibitive for individuals,
   its comprehensive scope may make it a useful reference tool for
   support groups and patient libraries. The topics covered include the
   medical issues in head injury, inpatient rehabilitation, preparing for
   home, outpatient options, mild-to-moderate head trauma, funding
   sources, how to choose an appropriate treatment facility, long-term
   placement considerations, cognitive and behavioral problems and how to
   manage them, emotional problems experienced by families, long-term
   medical and psychological problems, substance use/abuse and the person
   with TBI, medications and side-effects, the family as educator,
   special considerations for children and the elderly, and community
   reintegration. Includes glossary, bibliography, and index.
   
   HEATH Resource Center. (1988). The Head Injury Survivor on Campus:
   Issues and Resources. Washington, DC: Author. Available from: Heath
   Resource Center, One Dupont Circle NW, Suite 800, Washington, DC
   20036-1193. 800/544-3284; 202/939-9320. Free.
   This publication offers encouragement and information resources to
   college students with head injuries, their families, school
   administrators, and faculty members. Included is information about the
   types of programs that are available, tips for setting up a program,
   and questions that should guide program planning (for students, family
   members, and professionals). Includes descriptions of successful
   programs, including addresses and phone numbers of people to contact
   for more information.
   
   Hoffman, M., Lehmkuhl, D., Probst, D., & Sawicki, R., (Eds.). (1989).
   Brain Injury Rehabilitation: A Manual for Families. Houston, TX: The
   Institute for Rehabilitation and Research, Texas Medical Center.
   Available from the Brain Injury Program, The Institute for
   Rehabilitation and Research, 1333 Moursund, Houston, TX 77030-3405.
   713/797-5945. Cost: $60 (plus $3 shipping).
   Manual developed to help families of persons with traumatic brain
   injury understand the effects of the injury, participate in the
   rehabilitation process, adjust to changes in roles and relationships,
   and become aware of the resources that are available for assistance.
   
   Lehmkuhl, L. D. (Ed.). (1991). Brain Injury Glossary. Houston, TX: The
   Institute for Rehabilitation and Research (TIRR). Available from HDI
   Publishers. 713/682-8700. Cost: $7.50.
   Subtitled "A Glossary of Terms and Definitions of Interest to Family
   Members and Survivors of Head Injury, Case Managers, Insurance
   Representatives, Staffs of Health Care Facilities, Staffs of
   Governmental Agencies, Local, State, Regional, and National Head
   Injury Associations." Compiled by the manager of the Head Injury
   Rehabilitation Research Project at TIRR, this glossary briefly defines
   approximately 400 terms. It was originally compiled to improve
   communication between researchers, but is understandable to readers
   without medical backgrounds.
   
   Miller, C., & Campbell, K. (1987). From the Ashes: A Head Injury
   Self-Advocacy Guide. Seattle, WA: Phoenix Project. Available from the
   Phoenix Foundation, P.O. Box 84151, Seattle, WA 98124. 206/329-1371;
   206/621-8558. Cost: $20 (plus $5 shipping).
   A handbook written by two women with brain injuries for fellow persons
   with brain injuries. It addresses what happens functionally and
   psychologically when the brain is injured, recognizing the changes in
   behavior caused by head injury, ways to recognize what triggers
   reactions like a sense of separateness, irritability, headache,
   disorientation, and disinhibition, and self-management principles to
   help detect, analyze, correct, and adjust responses to the on-going
   problems people with head injury experience. Also discussed is finding
   the right doctor, medical tests, psychic losses, psychic pain, and
   life changes. Includes a glossary and bibliography.
   
   Miller, L. (1993). When the Best Help is Self-Help, or, Everything You
   Always Wanted to Know about Brain Injury Support Groups. The Journal
   of Cognitive Rehabilitation, (10)6, 14-17. NARIC Accession number:
   XJ24596.
   This article discusses the benefits of brain injury support groups to
   persons with brain injury and their families, and outlines steps
   towards forming a support group.
   
   National Head Injury Foundation. (1994). National Directory of Head
   Injury Rehabilitation Services. Washington, DC: Author. Available from
   the National Head Injury Foundation (NHIF), 1776 Massachusetts Avenue
   NW, Suite 100, Washington, DC 20036. 800/444-6443; 202/296-6443.
   202/296-8850 (fax). Cost: $40.
   The 1994 directory lists thousands of detailed descriptions and
   services, and includes a comprehensive indexing system that lists
   rehabilitation programs, as well as individual service providers.
   
   Pi Lamba Theta National Honor and Professional Association in
   Education, San Jose Area Chapter. (1983). Helping Head Injury and
   Stroke Patients at Home: A Handbook for Families. San Jose, CA:
   Author. Available from: Mary Ellen Dierks, 5266 Cribari Heights, San
   Jose, CA 95135. Cost: $20 (CA residents need to add $1.65 sales tax).
   This self-help handbook gives specific examples of cognitive skills
   which injury may have impaired, and describes retraining techniques
   for cognitive skill improvement. Topics discussed include: memory,
   visual-spatial relationships, language-communication, slow responses,
   judgment-reasoning, planning-follow-through, rights, and do's and
   don'ts. Includes bibliography, glossary, suggested progress chart, and
   two resource sections.
   
   Pieper, B. (1991). For Families from Families: What They Told Us About
   Having a Child with a Traumatic Brain Injury. Albany, NY: New York
   State Head Injury Association. Available from: New York State Head
   Injury Association, 855 Central Avenue, Albany, NY 12206.
   518/459-7911. Cost: $3.
   Report from a survey of families in which a child under the age of 16
   had experienced a traumatic brain injury. The survey was designed to
   elicit information about the impact of head injury in the families'
   lives, the families' service needs, and availability of services.
   Families were asked about their most important needs: responses
   centered on the need for complete, honest, accurate, and
   understandable information about their child's condition, changes in
   his condition, and the care provided.
   
   Pieper, B. (1991). Sisters and Brothers, Brothers and Sisters in the
   Family Affected by Traumatic Brain Injury. Albany, NY: New York State
   Head Injury Association, under a grant from NIDRR. Available from: New
   York State Head Injury Association, 855 Central Avenue, Albany, NY
   12206. 518/459-7911. Cost: $3.
   This paper discusses the family stress that often accompanies TBI, how
   parents can identify the unspoken concerns of uninjured brothers and
   sisters, and methods parents have used to reduce the concerns. The
   methods included are strengthening communications, finding people who
   can provide emotional support, and arranging sibling support group
   meetings guided by a professional. Includes resource listing.
   
   PSI International. (1986). The Silent Epidemic: Rehabilitation of
   People with Traumatic Brain Injury. Rehab BRIEF, (9)4. Washington, DC:
   National Institute on Disability and Rehabilitation Research.
   Available from NARIC at 800/346-2742. Single copies are free.
   Defines traumatic brain injury and describes the patterns of damage
   caused by closed head injury, specific brain functions that can be
   affected, residual deficits, myths of recovery versus factors in
   improvement, vocational rehabilitation intervention, and the role of
   head injury rehabilitation professionals. While this document provides
   good introductory information about head injury, a few of the listings
   in the resource section are no longer current.
   
   PSI International. (1991). Aphasia. Rehab BRIEF, (13)5. Washington,
   DC: National Institute on Disability and Rehabilitation Research.
   Available from NARIC at 800/346-2742. Single copies are free.
   Contains a review of the clinical perspectives on aphasia and areas of
   concern in the delivery of services to people with aphasia. The first
   section examines changing views of the nature of aphasia and the
   implications for clinical practice. The second section explores issues
   of concern in service delivery, including support for aphasic people
   and their families, specialized personnel trained to meet the needs of
   aphasic people, service delivery in rural areas, cultural and
   linguistic diversity, and responses to needs in service delivery.
   
   Sachs, P. R. (1986). Family Guide to Evaluating Transitional Living
   Programs For Head-Injured Adults. Cognitive Rehabilitation. (4)6, 6-9.
   NARIC Accession Number: XJ7246.
   This guide tells how family members can evaluate transitional living
   programs. These programs generally include speech, cognitive memory,
   and behavioral therapies for people with a head injury and are often
   an essential step between inpatient treatment for the injury and
   living independently after the medical problems have diminished.
   Differentiates transitional living from other types of head injury
   treatment.
   
   Spanbock, P. (1992). Children and Siblings of Head Injury Survivors: A
   Need to Be Understood. Journal of Cognitive Rehabilitation, (10)4,
   8-9. NARIC Accession Number: XJ22967.
   This article discusses issues to consider when dealing with children
   and siblings of individuals who have sustained head injuries.
   
   Willer, B. S., Allen, K. M., Liss, M., & Zicht, M. S. (1991). Problems
   and Coping Strategies of Individuals with Traumatic Brain Injury and
   Their Spouses. Archives of Physical Medicine and Rehabilitation,
   (72)7, 460-464. NARIC Accession Number: XJ20398.
   This document examines the problems and coping strategies of people
   with head injury and their uninjured spouses. Researchers gathered
   information from 20 men and 11 women, at least one and a half years
   after the injury. The report discusses the resulting list of the top
   five or six problems and coping strategies of wives with head injury,
   wives whose husbands have head injury, husbands with head injury, and
   husbands whose wives have head injury.
   
   Ylvisaker, M., Hartwick, P., & Stevens, M. (1991). School Reentry
   Following Head Injury: Managing the Transition from Hospital to
   School. Journal of Head Trauma Rehabilitation, (6)1, 1-22. NARIC
   Accession Number: XJ19408.
   This journal article examines elements involved in the successful
   return to school for children and youth following a head injury.
   Topics discussed include goals of school reentry programming, the
   initial steps in reentry planning, activities during rehabilitation
   admission that are directed toward reentry into the school system,
   reentry activities undertaken shortly before discharge from
   rehabilitation, transitional classrooms, head injury consultants, and
   special school reentry problems such as summer discharge, children
   unable to attend school, mild injuries with good recovery,
   preschoolers, transportation, and funding.
   
  About this Document
  
   This guide was produced by the [9]National Rehabilitation Information
   Center (NARIC), a project funded by NIDRR under contract #HN93029001.
   NARIC is operated by KRA Corporation. Copyright © 1995 KRA
   Corporation.
   
   This document is available in several forms: as an electronic text
   file (this document), on disk, on cassette, in braille, and in printed
   form (both in large print and formatted with a desktop publishing
   program). This guide is part of a series of resource guides produced
   by NARIC.
   
   Those interested in distributing this document in printed form are
   encouraged to contact NARIC at the below address, and we will arrange
   to send you a free copy in any of the formats mentioned above.
   
   The National Rehabilitation Information Center invites your comments
   and recommendations on this resource guide; corrections, information
   about publications and resource information that is not included here,
   and other suggestions are welcome.
   
   Please address your remarks to NARIC, 8455 Colesville Road, Suite 935,
   Silver Spring, MD 20910-3319, or to [10]Dan Wendling, resource guide
   editor .
   
   NARIC's phone numbers are: 800/227-0216, or in Maryland and outside
   the United States, 301/588-9284 (both are voice); our TT number is
   301/495-5626, and our fax number is 301/587-1967.
   
   Date of print document release (revised edition): March 1994 Date of
   electronic document release (revised edition): May 199