Appendix III

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Resources

Patient Education Resources

BSE Shower Cards and other educational materials, American Cancer Society

The FDA has produced pamphlets in simple English and Spanish that can be downloaded from this web site. Topics include Menopause, Birth Control, and Mammograms. http://www.fda.gov/opacom/lowlit/englow.html

Let's Talk about Health: What Every Woman Should Know: The GYN Exam
($18) The Arc, (888) 368-8009; www.thearcpub.com
A video on the breast and pelvic exam, developed just for women with developmental disabilities.

Models of Human Genital Anatomy
Jim Jackson and Company, 33 Richdale Avenue, Cambridge, MA 02l40, (6l7) 864-9063
Lifelike, life size rubber models.

Mother-To-Be: A Guide to Pregnancy and Birth for Women with Disabilities
Rogers, Judith and Matsumura, Molleen
MedDeck, 1991, Demos Publication, 428 East Preston Street, Baltimore, MD 21298-6564
Pregnancy and childbirth for women with disabilities.

Revised ARCA AIDS Education Curriculum (1992)
Marylou Scavarda, MSW, Lynne Muccigrosso, BA, & Patricia Present, MSW
Association of Regional Center Agencies (ARCA), 915 I St. Suite 1050, Sacramento CA 95814, (916) 996-7961
A six-session curriculum on HIV prevention education for adults with mild developmental disabilities.

Anatomical Dolls
You can look at anatomical dolls in various ages and skin colors at www.migima.com, www.feelingscompany.com or write: Teach-A-Bodies, 2544 Boyd Street, Fort Worth, TX 76109

The Gyn Exam Handbook and videotapes with teacher's guide
Stanfield & Co., P.O. Box 1983, Santa Monica, CA 90406, (213) 395-7466
Photos, videotapes, and teacher's guides designed to educate girls and women with special needs about breast and pelvic exams, the clinic procedures, and their importance for health care.

Resources on Informed Consent

Consent Manual
California Healthcare Association, (800) 494-2001, www.cha-cahhs.org
This manual looks at California law in depth.

HIV & Developmental Disabilities: An AIDS Resource Manual
edited by Ellen S. Fishman, J.D.
The Association of Regional Center Agencies (ARCA), 915 I St. Suite 1050, Sacramento CA 95814, (916) 996-7961.
Contains an excellent and comprehensive discussion of the legal and ethical factors surrounding HIV testing and treatment.

Informed Consent, Sexuality, and People with Developmental Disabilities: Strategies for Professional Decision-Making
Laura K. Griffin, J.D.
1996, ARC Milwaukee, 1126 South 70th Street, Suite N 408 B, Milwaukee, Wisconsin, 53214. (414) 774-6255.
Includes examples and discussions of many informed consent scenarios.

Informed Consent Videos
Infortronics at (800) 992-2040 or http://www.medsite.com/ produces several videos on informed consent for reproductive health care procedures such as laparoscopy.

Local Bay Area Resources

 

Alta Bates Summit Medical Center
Breast Health Access for Women with Disabilities (BHAWD)

(510) 204-4866
www.bhawd.org
BHAWD is a unique program providing breast health services to women with disabilities, including adaptive BSE training, CBE, and referrals for wheelchair-accessible mammograms. It is a partnership of medical, disability and community organizations. In addition to direct services, BHAWD conducts research into breast screening rates and barriers to breast health services for women with disabilities.

Disability Rights Advocates (DRA)
Health Access Project

449 15th Street, Suite 303
Oakland, CA 94612
(800) 926-0274 / TTY (510) 451-8644
www.dralegal.org
DRA is developing written guides for practitioners and consumers on rights to health care access. These guides will cover all aspects of accessibility including access to health insurance. They will be available by summer, 2001. DRA will also be providing training around the state on access rights.

Hands On Sign Language Service
800) 900-9478
TTY: (800) 900-9479
www.handsonsvs.com
Hands On arranges sign language interpreting services throughout the western states.

Through the Looking Glass
2198 6th Street #100
Berkeley, CA 94710
(510) 848-1112 (Bay Area)
(800) 644-2666 / TTY: (800) 804-1616 (beyond Bay Area)
www.lookingglass.org
Through the Looking Glass provides services, adaptive equipment and peer support for parents with disabilities, including parents with developmental disabilities.

Planned Parenthood: Shasta-Diablo
Disability Program

2185 Pacheco Blvd.
Concord, Ca 94520
(925) 676-0505
Planned Parenthood: Shasta-Diablo provides education, counseling and clinical services for people with disabilities, as well as training and consultation to health care providers, teachers and parents. Their library has many educational resources.

Protection and Advocacy, Inc. (P&A)
P&A is a statewide organization that is funded by the state to protect the rights of people with disabilities. Each P&A office has a Clients' Rights Advocate. P&A can also provide information on consent.
(800) 776-5746, (TTY) (800) 776-5746
www.pai-ca.org

The Committee on Sexuality: Advocating for People with Developmental Disabilities
21450 Bear Creek Road, Los Gatos CA 95030
www.w3ddesign.com/committee
The Committee puts out a newsletter, produces a symposium, and advocates for the sexual rights of people with developmental disabilities.

United Cerebral Palsy (UCP ) of the Golden Gate
Women's Health Project

Oakland, CA 94612
(510) 832-7430
http://www.ucp.org/ucp_local.cfm/35
The Women's Health Project is a partner in the BHAWD clinic. WHP also provides referrals to community health care providers who welcome women with disabilities into their practices or clinics. The Project sponsors yoga classes, acupressure and self-help workshops, and support groups for women with disabilities. The WHP staff provides in-service presentations for health care providers by request.

Web Sites

www.ddhealthinfo.org
A site to help clinicians in California better serve people with developmental disabilities. It includes current research and physician-to-physician mentoring.

www.4woman.gov
This is the federal government's main web site on women's health. It includes quite a lot of information for women with disabilities.

At: http://www.4woman.gov/search/A2ZResult.CFM
You can find links to fact sheets on contraception for women with epilepsy or mobility impairments.

www.sexualhealth.com
The Sexual Health Network provides sexuality information and other resources for people with disabilities, illnesses, or other health related problems.

www.lookingglass.org
Through the Looking Glass offers resources and support for parents with disabilities.

www.thearc.org
The Arc of the United States serves people with developmental disabilities. The web site includes a useful article on aging: Aging with Developmental Disabilities: Women's Health Issues by Allison A. Brown and Leone Murphy, R.N.

http://www.ndss.org/main.html
The National Down Syndrome Society

www.dralegal.org
Disability Rights Advocates publishes guides to health care accessibility rights for people with disabilities and for professionals.

www.pai-ca.org
Protection and Advocacy provides state-funded legal advocacy for people with disabilities.

www.bhawd.org
The website of Breast Health Access for Women with Disabilities provides information for women and providers to help increase access to breast health care.

www.westernu.edu/cdihp.html
Site of a new organization to support training of health professionals in disability issues.

www.ppfa.org
Up-to-date information on sexual health, including birth control, sexuality transmitted diseases and menopause.

Sources of Accessible Equipment

Physicianequipment.com
Power examination tables

www.midmark.com
The Welner Patented Wheelchair Accessible Power Tables
welnersmd@aol.com

The Ritter 119 Power Examination Table
      Cida Medical Products and Equipment

The Nevin 8800 Advantage Power Table
Nevin Laboratories, Inc.
5000 S. Halsted Street
Chicago, IL 60609
Phone: (312) 624-4330
Fax: (312) 624-7337
Toll Free: 800-428-2253

      Cida Medical Products and Equipment

The Bennett Contour Plus Mammography System
http://www.trexmedical.com/

www.rpkco.com
800-933-7751