SCI-FYI. A Guide to Northern California Resources for Individuals with Spinal Cord Injury. 2nd Edition. Spinal Cord Injury- For Your Information

Transcription

1 Spinal Cord Injury- For Your Information SCI-FYI A Guide to Northern California Resources for Individuals with Spinal Cord Injury 2nd Edition Internet Legal Parenting Publications Driving Education Finances Health So Many Resources, Its Scary! Recreation Sexuality Travel Research Vocational The Rehabilitation Research Center for Spinal Cord Injury, Santa Clara Valley Medical Center

2

3 Spinal Cord Injury For Your Information (SCI-FYI) 2ND Edition A Guide to Northern California Resources for Individuals with Spinal Cord Injury The Rehabilitation Research Center for TBI & SCI Santa Clara Valley Medical Center San Jose, CA Copyright 2001 Rehabilitation Research Center for TBI & SCI

4

5

6

7 Introduction Welcome to the SCI-FYI II, the second edition of the SCI-FYI (Spinal Cord Injury For your Information: A Guide to Resources for Individuals with SCI). The first edition was completed in February, 1997 and recently revised in January, The SCI-FYI is a comprehensive resource guide intended for anyone in Santa Clara Valley needing information on services related to spinal cord injury from the rehab professional looking for services to help a client, to the individual with a spinal cord injury seeking to improve his or her personal situation. As stated in the previous edition of the SCI-FYI, and as with any directory of community agencies, it will need updating by the time it is published, but the majority of information should remain current and valuable for those seeking resources. All of the agencies listed in the SCI-FYI are also included in the Appendix to help locate information quickly. The SCI-FYI was compiled primarily from information in the Resource Center at the Rehabilitation Research Center for TBI and SCI, and continues to include primarily local (Northern California) resources. However, state and national resources that may be of particular importance to individuals with SCI are also included. We do not endorse any of the resources nor make any guarantees regarding the information and services included in this directory. We hope you find that the SCI-FYI meets your needs for a resource that provides information on the range of services for individuals with spinal cord injuries in the Santa Clara Valley area. If you have potential additions or deletions for the SCI-FYI, or have any suggestions for the resource guide, please write, FAX, telephone or me at the address or phone number below. We hope that future editions of the SCI-FYI will continue to assist you in your efforts to improve the lives of individuals with spinal cord injuries and their families. The SCI-FYI is available free and in its entirety online at < Debra L. Burdsall, MPH, OTR SCI-FYI Editor The Northern California Regional Spinal Cord Injury Model System of Care Rehabilitation Research Center for TBI and SCI Santa Clara Valley Medical Center 950 S. Bascom Ave., Suite 2011 San Jose, CA Phone: 408/ Ext. 24 FAX: 408/ Toll free: 800/ debbie@tbi-sci.org (Funded by Grant #H133N50003 from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research. Spinal Cord Injury For Your Information i

8

9 Acknowledgments We would like to take this opportunity to acknowledge all of the individuals whose contributions helped make this valuable resource a reality. Christin Corelis spent endless hours working on the first edition of the SCI-FYI - contacting agencies, obtaining information, and word processing. She started with a filing cabinet full of information, created a layout for the resource guide, collected and organized information, and saw the project through into its final stages. The revision of this resource guide would not have been possible without the hard work and dedication of Sherri Rogers who spent endless hours on the phone contacting the agencies and verifying information. Jerry Wright, Administrator for the Rehabilitation Research Center for TBI and SCI, was responsible for the layout, design, and indexing of the revised SCI-FYI. John Hatten was a co-worker at the Traumatic Brain Injury Project and editor of the third and fourth editions of the Traumatic Brain Injury Resource Directory (TBIRD). John s outstanding work on the TBIRD provided us with a working model for the SCI-FYI, and made the seemingly insurmountable task of compiling such a guide possible in the first place. Diana Harrison from Therapeutic Recreation at Santa Clara Valley Medical Center provided thorough and valuable information on recreation, leisure and transportation resources in the original version of the SCI-FYI. This resource guide was peer reviewed by Tamara Bushnik, PhD, Mary Lou Gustafson, RN, BSN and Kazuko Shem, MD. The time and effort they put forth to give valuable input is much appreciated. The work on the SCI-FYI was made possible through funding from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research, Grant #H133N And lastly, those of you who provided us with updated and accurate information should be acknowledged for your contributions to this SCI Resource Guide and, more importantly, for enriching the lives of individuals with spinal cord injury. Spinal Cord Injury For Your Information iii

10

11 Table of Contents Introduction i Acknowledgments ii Table of Contents v How to Use this Directory vii Top Ten Resource List ix 1. Alcohol and Chemical Dependency Agencies Assistive Technology Resources Attendant Care Resources Consumer Resources Crisis Intervention, Counseling and Mental Health Agencies Disability Related Organizations and SCI Associations Driving Evaluation and Equipment Durable Medical Equipment Education Resources Financial Aid and Assistance Health Related Services Housing Agencies and Resources Independent Living Legal and Advocacy Services Parenting and Family Resources Recreation, Leisure and Entertainment Resources Regeneration and Curative Research Research and Training Organizations Resource Directories/Services and Information Resources Resources for Special Populations SCI Internet Resources SCI Publications Sexuality and Fertility Resources Support Groups Transportation and Travel Vocational/Prevocational Services A. Index of Agencies/Facilities Spinal Cord Injury For Your Information v

12

13 How to use this directory Finding information Start with the Table of Contents. See if you can find the topic that you are interested in. Look through the chapter to see if there is a resource that can help you. If you find one, you may want to attach a post-it tab so that you can find the page later. Write down all of the information that you will need to make your phone call: agency name, telephone number, name of contact person. You may also look up resources in the Index. You can find them listed by their name, and also by the city they are located in (handy if you have issues with transportation). If you are unable to find a resource that will help you in this directory, a good first step would be to call your local Independent Living Center (Chapter 13). They will have a good idea of what is available in your area. A second step would be to call or us (Rehabilitation Research Center for TBI & SCI). We have a SCI resource specialist who may be able to help. Call us at 408/ extension 24, or us at scifyi@tbi-sci.org Preparation for making a phone call When you are making a phone call be sure to prepare in advance so that you have all of the information in front of you and you have paper to write down the information you receive. Before you call, it is very important to know what you want. You will be far more successful if you can make a specific request rather than just asking for help. Making the call Introduce yourself and a give a brief description of your situation. Ask about the services that they provide. The most important point is to remember to NOT GIVE UP at the first sign of resistance. Sometimes people either don t understand your request or are not sure how they can help you. Sometimes you may need to explain your request in several different ways. Many of the agencies/individuals listed in this guide do not work only with individuals with spinal cord injuries. You may need to describe your issues and/or problems. Sometimes an agency may not be able to help you, but the person you are talking with can make other suggestions. You will also find that some of the services are no longer offered, or the agency is no longer in business. Documenting the call You will definitely want to write down: Who you talked with. Can they help? Are you supposed to call back, or do something else to follow-up? Did they give you other suggestions? Spinal Cord Injury For Your Information vii

14

15 The SCI-FYI Top Ten List The Top Ten List is a new addition to the SCI-FYI. Here are the most useful and most used resources within the SCI-FYI. These are the resources that we use every week to answer requests ed to us from around the globe. Compiled at the home office in San Jose, California, here are the SCI-FYI s top ten resources. Chapter(s) 1. Spinal Cord Injury Information Network (UAB) 9, 21, 22 Website: < Excellent resource - very useful Can access 18 fact sheets with information on a wide variety of topics relevant to SCI. Some fact sheets are available in Spanish 2. Listing of SCI Self-Care Manuals 3, 9 Six self-care/patient education manuals that are excellent resources for information on bowel, bladder, and skin care, how the body s systems are affected by SCI, and psychosocial issues Great tool to use in training a personal care assistant 3. Spinewire Website 17, 21 Website: < Outstanding website developed exclusively for the SCI community Features many current articles, SCI related news pieces, including research related news 4. A Guide and Resource Directory to Male Fertility 23 Following Spinal Cord Injury/Dysfunction (Booklet) Maria J. Amador, BSN, CRRN, Charles M. Lynne, MD, Nancy L. Brackett, PhD, HCLD Miami Project to Cure Paralysis An excellent comprehensive resource guide to current and reliable information on male fertility following SCI Available free of charge Spinal Cord Injury For Your Information ix

16 SCI-FYI s Top Ten List Chapter(s) 5. Through the Looking Glasss 15 Berkeley, CA Website: < Serves families in which one or more members, whether parent or child, has a disability or medical issue Clinical and supportive services, training and research 6. Silicon Valley Independent Living Center 3, 5, 6, 12, San Jose, CA 13, 14, 16, 26 Website: < Personal care assistant recruitment and referral; training in the management of personal care assistants Advocacy and legal services Information and referral regarding available and accessible housing Counseling, individual and group support Independent living skills Vocational services Residential training program 7. National Spinal Cord Injury Association 6, 21, 22, Silver Spring, MD 23, 24, 25 Website: < Resource Center SCI Life magazine In Touch with Kids Network for children with SCI 8. Medline - PubMed, Internet Grateful Med 21 Website: < The National Library of Medicine provides two free systems to search medical topics in the MEDLINE database About 11 million references and abstracts are found in this database x Rehabilitation Research Center for TBI & SCI

17 SCI-FYI s Top Ten List Chapter(s) 9. City of San Jose, Office of Therapeutic Services/ 16 South Bay Wheelchair Athletic Program San Jose, CA Website: < Sponsor a number of programs for individuals with disabilities Support groups Aquatics Wheels on Fire - Junior Wheelchair Sports Team Pacific Spartans - Wheelchair Basketball Team San Jose Sting Quad Rugby Team Water Wheels Swim Team San Jose Steamrollers - Power Soccer Team 10. Websites for Locating Physicians 11 Website: < Website: < Website: < Website: < Spinal Cord Injury - For Your Information xi

18

19 1 1. Alcohol and Chemical Dependency Agencies 2. Assistive Technology Resources 3. Attendant Care Resources 4. Consumer Resources 5. Crisis Intervention, Counseling and Mental Health Agencies 6. Disability Related Organizations and SCI Associations 7. Driving Evaluation and Equipment 8. Durable Medical Equipment 9. Education Resources 10. Financial Aid and Assistance 11. Health Related Services 12. Housing Agencies and Resources 13. Independent Living 14. Legal and Advocacy Services 15. Parenting and Family Resources 16. Recreation, Leisure and Entertainment Resources 17. Regeneration and Curative Research 18. Research and Training Organizations 19. Resource Directories/Services and Information Resources 20. Resources for Special Populations 21. SCI Internet Resources 22. SCI Publications 23. Sexuality and Fertility Resources 24. Support Groups 25. Transportation and Travel 26. Vocational/Prevocational Services A. Index

20

21 Alcohol and Chemical Dependency Agencies Individuals with SCI are at risk for dependency on alcohol and/or drugs. For many, the substance use may have contributed to their SCI. For others, the loss of control, pain and depression often experienced by individuals with SCI can lead to substance abuse. Most individuals with SCI are in the age range where experimentation with drugs and/or alcohol is common. Many with SCI turn to substance abuse (substances include alcohol and other mind altering drugs, and abuse involves continued use despite the consequences or recurrent use in situations when use is dangerous). The following agencies work with people who are involved with substance abuse and dependence (dependence involves impaired control of the use of the substance, and the continued use despite the consequences). One major problem for people with SCI who use or abuse substances is the danger involved. The use or abuse puts one at risk for further injury. Additionally, complications related to spinal cord injury such as pressure sores, spasticity, and urinary tract infections are more frequent in those who use drugs and/or alcohol. As it is true with many of the other agencies and facilities listed in this resource guide, one type of program may work better than another for an individual person. Substance abuse is treatable, although not always easily. With all that in mind, below are listed many of the organizations and facilities that offer some help in dealing with substance abuse. Alcoholics Anonymous (AA) 24 hour help line: 408/ E. Hamilton Ave., Suite D Campbell, CA aasanjose.org 24 hour hotline Information on AA meetings in Santa Clara Valley Monterey County/Salinas Location 24 hour help line: 831/ Adult and Child Guidance Center 408/ FAX: 408/ N. First St., Suite 200 San Jose, CA Castro St., Suite 122 Mountain View, CA / Comadres women s outpatient polydrug abuse program Compadres men s outpatient polydrug abuse program Counseling services for children, adults, families and the elderly Spinal Cord Injury For Your Information 1-1

22 1. Alcohol and Chemical Dependency Agencies Al-Anon 408/ Meetings and locations: 408/ Support groups for those whose lives have been affected by someone s drinking Call for locations and meeting times Asian-Americans For Community Involvement (AACI) 408/ Moorpark Ave., Suite 300 San Jose, CA Substance abuse intervention and treatment program Blossoms Prenatal Substance Abuse Program 408/ Alum Rock Ave. San Jose, CA Outpatient program for pregnant or parenting women C.A.P.S. (Combined Addicts Prevention Services) 408/ Hotline: 408/ Gish Rd., Suite 200 San Jose, CA day outpatient program Must go through Gateway (managed care) Counseling and psychosocial groups Chemical Dependency Institute of Northern California 408/ / Samaritan Drive San Jose, CA Inpatient detox program Outpatient services 1-2 Rehabilitation Research Center for TBI & SCI

23 1. Alcohol and Chemical Dependency Agencies Chemical Dependency Recovery Center 650/ El Camino Hospital Chemical Dependency Services 2500 Grant Road Mountain View, CA Individual counseling, lectures and group therapy sessions Free ongoing educational series AA meeting following every educational series Crisis intervention - stay of up to 24 hrs Cocaine Anonymous 415/ San Francisco, CA Participants help each other to abstain from cocaine and other mind altering substances No counseling treatment or therapy at the sessions Community Health Awareness Council 650/ P.O. Box 335 Mountain View, CA Individual and group counseling Day treatment program for adolescents Daytop Village 650/ Pulgas Ave. East Palo Alto, CA Redwood City location 650/ Residential community for chemically dependent adolescents Department of Alcohol and Drug Services 408/ FAX: 408/ Lenzen Ave., 3rd Floor San Jose, CA Information and referral only Spinal Cord Injury For Your Information 1-3

24 1. Alcohol and Chemical Dependency Agencies El Camino Hospital Chemical Dependency Services Care Line: 650/ / Grant Rd. Mountain View, CA Outpatient program Family Health Foundation of Alviso 408/ P.O. Box 1240 Alviso, CA Information and referral Fenix Services Institute 831/ FAX: 831/ Main St., Suite 403 Watsonville, CA Individual and group counseling Domestic violence counseling Gateway 24 hour phoneline: 800/ Managed care referrals for those seeking county supported care Information and help line Horizon Services, Inc. 510/ P.O. Box 308 Mt. Eden, CA Non-residential and residential programs throughout the Bay Area for men and women recovering from addiction to alcohol or other drugs Education and support services to individuals dealing with alcohol or other drug related problems Horizon South 408/ S. Bascom Ave. San Jose, CA day detox Residential services 1-4 Rehabilitation Research Center for TBI & SCI

25 1. Alcohol and Chemical Dependency Agencies Kids are Special - Eastfield Ming Quong 408/ FAX: 408/ Llewellyn Ave. Campbell, CA Website: < Children s and parents groups for families with children impacted by substance abuse of parent or caregiver Mariposa Lodge Alcohol Recovery Homes, Inc. 408/ FAX: 408/ Detox: 408/ P.O. Box San Jose CA Residential alcohol/drug program for women Narcotics Anonymous 24 hour phoneline: 408/ National Council on Alcohol and Drug Dependency (NCADD) 408/ FAX: 408/ hr Help: 408/ North Market, Suite 175 San Jose, CA Crisis intervention help-line: 408/ Drug prevention program, youth education program, minors in possession program Education program for individuals with family members in county treatment Pathway House Residential Treatment Center 408/ South 11th St. San Jose, CA Comprehensive treatment program Individual and group counseling 12-step self-help groups Job development Spinal Cord Injury For Your Information 1-5

26 1. Alcohol and Chemical Dependency Agencies Pathway Outpatient Program 408/ Scott Blvd., Suite 30 Santa Clara, CA Group, family and individual counseling for adults and adolescents Santa Clara County Central Alcohol Services (Treatment Alternative Program - TAP) 408/ Lenzen Ave., First Floor San Jose, CA Individual and group counseling for alcohol abuse Santa Clara County Women s Treatment Services 408/ Moorpark Ave., #10 San Jose, CA Heroin addiction, detox services, and maintenance center S.M.A.R.T. Recovery (Self Management and Recovery Training) 408/ Ladero St. Fremont, CA Discussion meetings - alternative to Alcoholics Anonymous Helps individuals cope with drug and alcohol dependency Social Advocates for Youth 408/ South DeAnza Blvd., Suite A-208 San Jose, CA Individual, group and family counseling for all ages Parenting workshops Assessments of drug and alcohol use STEPS 408/ Oakland Rd. San Jose, CA Group counseling Individual counseling Family counseling Programs focus on alcohol dependency 1-6 Rehabilitation Research Center for TBI & SCI

27 1. Alcohol and Chemical Dependency Agencies Stride Program Combined drug and alcohol program Group and individual counseling Outpatient program East Valley Treatment and Recovery Center 408/ Burdette Dr., Suite B San Jose, CA West Valley Treatment and Recovery Center 408/ Knowles Ave. Los Gatos, CA North County Treatment and Recovery Center 650/ Grant Ave. Palo Alto, CA BOOKS Alcohol and Other Drug Abuse Prevention for People with TBI and SCI Rehabilitation Institute of Chicago Education and Training Center 312/ Education and training book Alcohol, Tobacco and Other Drug Prevention Activities for Youth and Adults with Disabilities Substance Abuse Resources and Disability Issues (SARDI) School of Medicine at Wright State University P.O. Box 927 Dayton, OH / FAX: 937/ Website: < Spinal Cord Injury For Your Information 1-7

28 1. Alcohol and Chemical Dependency Agencies Inform Yourself- Alcohol, Drugs and Spinal Cord Injury: A Resource Guide for Persons with Spinal Cord Injury and Their Families John de Miranda, Ed.M. Available free of charge from: Paralyzed Veterans of America - Publications Center P.O. Box 753 Waldorf, MD / / FAX: 301/ Website: < You Can t Change the Past But You Can Choose a Future: The Facts About Spinal Cord Injury, Tobacco, and Other Drugs Resource Center on Substance Abuse Prevention and Disability National Clearinghouse for Alcohol and Drug Information P.O. Box 2345 Rockville, MD / FAX: 301/ Information about coping and life skills VIDEOTAPES Alcohol & Medications & You (1988) Rehabilitation Research Training Center at Baylor College of Medicine 1333 Moursund, B-107 Houston, TX / FAX: 713/ From Nowhere to Somewhere: Street Drugs and Your Rehabilitation (1988) Rehabilitation Research Training Center at Baylor College of Medicine 1333 Moursund, B-107 Houston, TX / FAX: 713/ Rehabilitation Research Center for TBI & SCI

29 2 1. Alcohol and Chemical Dependency Agencies 2. Assistive Technology Resources 3. Attendant Care Resources 4. Consumer Resources 5. Crisis Intervention, Counseling and Mental Health Agencies 6. Disability Related Organizations and SCI Associations 7. Driving Evaluation and Equipment 8. Durable Medical Equipment 9. Education Resources 10. Financial Aid and Assistance 11. Health Related Services 12. Housing Agencies and Resources 13. Independent Living 14. Legal and Advocacy Services 15. Parenting and Family Resources 16. Recreation, Leisure and Entertainment Resources 17. Regeneration and Curative Research 18. Research and Training Organizations 19. Resource Directories/Services and Information Resources 20. Resources for Special Populations 21. SCI Internet Resources 22. SCI Publications 23. Sexuality and Fertility Resources 24. Support Groups 25. Transportation and Travel 26. Vocational/Prevocational Services A. Index

30

31 Assistive Technology Resources Assistive technology is a broad term referring to the application of technology to assist individuals with SCI and other disabilities achieve independence by providing access to computers, communication devices and environmental controls. Assistive technology can enrich the lives of individuals with SCI by expanding educational and employment options, and assisting with aspects of daily life. Specific equipment consists of high tech tools to help individuals with SCI overcome physical obstacles and may include assistive devices such as specialized computer keyboards, software, joysticks, interactive touch screens, hands-free voice recognition systems, customized switches and other appliances. The first step in determining which type of equipment is appropriate for you is to be evaluated by a professional to determine your individual technology needs, abilities and goals in your environment. Your physical limitations and the skills necessary to use strategies and devices will all be taken into consideration before recommendations for specific equipment are made. The organizations listed below can provide you with information on evaluation and training for assistive technology, as well as specific devices available for individuals with SCI. Abledata 800/ / Colesville Rd. Silver Springs, MD Extensive collection of over 25,000 commercially available assistive technology aids and devices Ablenet 800/ FAX: 612/ th Ave. SE Minneapolis, MN Designs and manufactures simple to use technology No assessments Accent on Info 309/ FAX: 309/ P.O. Box 700 Bloomington, IL acntlvn@aol.com Publishes magazine 4 times a year; $12.00 subscription Sell books and products Information on consumer products Spinal Cord Injury For Your Information 2-1

32 2. Assistive Technology Resources Adaptive Device Locator System Academic Software, Inc 800/ / West Second St. at Broadway Lexington, KY Software package listing types of devices on the market and vendors $195 for package Assistive Device Assessment Program (ADAP) 619/ Alverado Ct., Suite 100 San Diego, CA Assessment only Speech therapy Assistive Technology (AT) Network 800/ / J Street, Suite 270 Sacramento, CA info@atnet.org Information and referral network that provides free information on: -devices for daily living, -assistive technology funding resources, -assistive technology service providers/suppliers, -assistive technology community resources Augmentative Communication News 831/ Surf Way, #237 Monterey, CA Publishes two newsletters Information and referral services 2-2 Rehabilitation Research Center for TBI & SCI

33 2. Assistive Technology Resources C.A.T.S. 916/ / Assistive Technology Network 660 J Street, Suite 270 Sacramento, CA Referrals Newsletter Contracts with other agencies Center for Accessible Technology 510/ Eighth St. Berkeley, CA info@cforat.org Computer access evaluations Resource and training center Center for Computer Assistance to Disabled (C-CAD) 214/ FAX: 214/ No. Stemmons Freeway, Suite 4041 Dallas, TX C-CAD@onramp.net Website: < Information and referrals on assistive technology Training Central Coast Assistive Technology Center 805/ FAX: 805/ TDD: 805/ Laurel Lane #132 P.O. Box 4310 San Luis Obispo, CA slomortola@aol.com Non-profit center performs evaluations (OT, SP, and Rehab technicians) Spinal Cord Injury For Your Information 2-3

34 2. Assistive Technology Resources Clearing House for Specialized Media and Technology State Department of Education 916/ J St., Suite 390 Sacramento, CA Website: < Educational catalog of services and devices for K-12 Closing the Gap 507/ FAX: 507/ P.O. Box 68 Henderson, MN info@closingthegap.com Website: < Publishes a bi-monthly newslettter providing information $29.00/yr. Publishes a resource directory - $14.95 Annual conference held in October Communication Aids for Children and Adults Crestwood Company 414/ No. Sidney Place Milwaukee, WI Information on products Merchandise catalog Davies Medical Center 415/ FAX: 415/ Castro and Duboce Streets San Francisco, CA Outpatient occupational therapy and rehabilitation Aptitude testing Department of Rehabilitation 800/ / TTY: 800/ K Street Mall Sacramento, CA Assistive technology evaluations 2-4 Rehabilitation Research Center for TBI & SCI