Women's Health Resources

Women's Health Resources

The resources on this site encourage women with developmental disabilities, along with their parents/families or caregivers to learn about a range of topics related to health and health promotion. Topics cover issues related to aging and general health, mental health, violence and abuse, sexuality and reproductive health, and access and barriers to health services for women with developmental disabilities. Resources related to professional associations and organizations that advocate and disseminate research findings for individuals with I/DD and their caregivers across the lifespan are also provided.

Resources for Women with Intellectual and Developmental Disabilities!

RRTCADD Resources and Publications

Aging and General Health Issues

Mental Health/Violence and Abuse

Sexuality and Reproductive Health

Access and Barriers to Health Services – Experiences with Health Professionals

Disabled Women's Organizations

Join WOMHLTHAGING-DD! Click to subscribe to an electronic mailing list (Listserv) on Women's Health and I/DD and access the informational archives (opens in a new window).

RRTCADD Resources and Publications

RRTCADD Publications Related to Women's Health Issues. These publications are available online through the RRTCADD Clearinghouse http://www.uic.edu/orgs/rrtcamr/pubslist.html.

Brown, A. A. & Murphy, L. (1999). Aging with developmental disabilities: Women's health issues. Arlington, TX: The Arc of the United States and the RRTC on Aging with Mental Retardation. Fact sheet available online at: http://www.uic.edu/orgs/rrtcamr/500015_womenshealth.pdf.

Brown, A. A. & Gill, C. J. (2002). Women with developmental disabilities: Health and aging. Current Women's Health Reports, 2, 219-225.

Abstract: Major shifts have occurred in the world of disability that have profound implications for health-service provision. Although health researchers and clinicians have begun to address the health needs of women with disabilities, representation of older women with intellectual disabilities in health research and health-care practice remains inadequate. As the visibility of this group continues to grow through policies that support greater community integration and longevity, they and their families, professionals, and advocates will require more information about their health concerns, and appropriate health services and options. This article provides an overview of major issues of women with developmental disabilities within the areas of primary health care, aging, access to health services, and future directions in research and practice. Article available online at: http://www.biomedcentral.com/content/pdf/cr-wr2334.pdf.

Gill, C. J. & Brown, A. A. (2002). Health and aging issues for women with intellectual disabilities in their own voices. In P.N. Walsh & T. Heller (Eds.). Health of Women with Intellectual Disabilities (pp. 139-153). Oxford: Blackwell Science Publishing.

Gill, C. J. & Brown, A. A. (2000). Overview of health issues of older women with intellectual disabilities. Physical & Occupational Therapy in Geriatrics, 18 (1), 23-36.

Gill, C.J., Kirschner, K.L., & Panko-Reis, J. (1994). Health services for women with disabilities: Barriers and portals. In A. J. Dan (Ed.) Reframing Women’s Health (pp. 357-366). Thousand Oaks, CA: Sage Publications.

Heller, T. & Marks, B. (2002). Health promotion and women. In P.N. Walsh & T. Heller, T.(Eds.). Health of Women with Intellectual Disabilities (pp. 170-189). Oxford: Blackwell Science Publishing.

Marks, B.A., Brown, A., Hahn, J.E. & Heller, T. (2003). Nursing Care Resources for Individuals with Intellectual and Developmental Disabilities across the Lifespan. Nursing Clinics of North America, 38(2), 373-393.

Seltzer, G. B., Schupf, N., & Wu, H. S. (2001). A prospective study of menopause in women with Down syndrome. Journal of Developmental Disability Research, 45 (1), 1-7.

Walsh, P. N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk, H., & Working Group (2000). Healthy Ageing – Adults with Intellectual Disabilities: Women’s Health Issues. World Health Organization, Geneva, Switzerland. Article available online at: URL: http://www.uic.edu/orgs/rrtcamr/womenshealthreport.html.

Walsh, P. N., Heller, T. (Eds.) (2002). Health of Women with Intellectual Disabilities. Order online at: http://www.uic.edu/orgs/rrtcamr/recentpub.htm.

Aging and General Health Issues

Aging with developmental disabilities: Women's health issues. Brown, A. A. & Murphy, L. (1999). Arlington, TX: The Arc of the United States and the RRTC on Aging with Mental Retardation. Available online at: http://www.uic.edu/orgs/rrtcamr/500015_womenshealth.pdf.

Chartbook on Women and Disability in the United States. An InfoUse Report. Jans, L., Stoddard, S. (1999). Washington, DC: US Department of Education, National Institute on Disability and Rehabilitation Research. Available online at: http://www.infouse.com/disabilitydata/womendisability/.

Disability Resources Monthly. A guide to Disability Resources on the Net. Available online at: http://www.disabilityresources.org/.

Diverse City Press. Diverse City Press Inc. produces and distributes inspiring and informational books, audio CD's and video tapes, dealing with persons with developmental disabilities, and a range of social issues. Available online at: http://www.diverse-city.com/.

Family Village. A global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. Available online at: http://www.familyvillage.wisc.edu/index.htmlx.

Health and aging issues for women with intellectual disabilities in their own voices. Gill, C. J. & Brown, A. A. (2002). In P. N. Walsh & T. Heller (Eds.). Health of Women with Intellectual Disabilities (pp. 139-153). Oxford: Blackwell Science Publishing.

Health and Wellness for Women with Disabilities. National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention. Available online at: http://www.cdc.gov/ncbddd/women/default.htm.

Health of Women with Intellectual Disabilities. Walsh, P. N., Heller, T. (Eds.) (2002). Available online at: http://www.uic.edu/orgs/rrtcamr/recentpub.htm.

Health promotion and women. Heller, T. & Marks, B. (2002). In P.N. Walsh & T. Heller, T.(Eds.). Health of Women with Intellectual Disabilities (pp. 170-189). Oxford: Blackwell Science Publishing.

Health services for women with disabilities: Barriers and portals. Gill, C.J., Kirschner, K.L., & Panko-Reis, J. (1994). In A. J. Dan (Ed.) Reframing Women’s Health (pp. 357-366). Thousand Oaks, CA: Sage Publications.

Healthy Ageing – Adults with Intellectual Disabilities: Women’s Health Issues. Walsh, P. N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk, H., & Working Group (2000). World Health Organization, Geneva, Switzerland. Available online at: http://www.uic.edu/orgs/rrtcamr/womenshealthreport.html.

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

Nursing Care Resources for Individuals with Intellectual and Developmental Disabilities across the Lifespan. Marks, B.A., Brown, A., Hahn, J.E. & Heller, T. (2003). Nursing Clinics of North America, 38(2), 373-393. Available online at: http://www.uic.edu/orgs/rrtcamr/nursing_resources_IDD.pdf.

Our Bodies, Our Selves for the New Century. Boston Women's Health Book Collective. Published by Touchstone, a division of Simon & Schuster Inc. (1998). Available online at: http://www.ourbodiesourselves.org/.

Overview of health issues of older women with intellectual disabilities. Gill, C. J. & Brown, A. A. (2000). Physical & Occupational Therapy in Geriatrics, 18 (1), 23-36.

Promoting the health and Wellness of People with Disabilities: Women's Health. North Carolina Office on Disability and Health. Available online at: http://www.fpg.unc.edu/~ncodh/pubs.htm.

The Last Sisters: Health Issues of Women with Disabilities. Carol J. Gill. Available online at: http://dawn.thot.net/cgill_pub.html.

The Midlife Health Needs of Women with Disabilities. Marina Morrow, British Columbia Centre of Excellence for Women’s Health. Available online at: http://www.bccewh.bc.ca/PDFS/challengesofchange.pdf.

Wellness and Aging with Disability. Includes active health care consumer strategies; information on specific disabilities, ethnic and cultural diversity; equity and access; exercise, managed care, women's issues and more. Available online at: http://www.jik.com/hwawd.html.

Women with developmental disabilities: Health and aging. Brown, A. A. & Gill, C. J. (2002). Current Women's Health Reports, 2, 219-225. Abstract: Major shifts have occurred in the world of disability that have profound implications for health-service provision. Although health researchers and clinicians have begun to address the health needs of women with disabilities, representation of older women with intellectual disabilities in health research and health-care practice remains inadequate. As the visibility of this group continues to grow through policies that support greater community integration and longevity, they and their families, professionals, and advocates will require more information about their health concerns, and appropriate health services and options. This article provides an overview of major issues of women with developmental disabilities within the areas of primary health care, aging, access to health services, and future directions in research and practice. Available online at: http://www.biomedcentral.com/content/pdf/cr-wr2334.pdf.

Women with Disabilities Health Care Summit: Paving the Way for Change. Maryann B. Hunsberger. Available online at: http://www.njddc.org/families10-2/fam10-2-17.htm.

Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Krotoski, D. M., Nosek, M. A., & Turk, M. A. (1996). Paul H. Brooke Publishing Co.

Mental Health / Violence and Abuse

Awareness, Assertiveness and Adapted Self-Defense Training for Women with Disabilities. Available online at: http://www.shdefense.com/Disabled.html.

Beyond Abuse: Treatment Approaches for People with Disabilities. Virginia Focht-New. Available online at: http://greg.quuxuum.org/journal/focht_new.html.

Center for Substance Abuse Treatment. (1998). Substance use disorder treatment for people with physical and cognitive disabilities. Treatment Improvement Protocol (TIP) Series 29, Substance Abuse and Mental Health Services Administration, DHHS Publication No. (SMA) 98-3249.

Diverse City Press. Diverse City Press Inc. produces and distributes inspiring and informational books, audio CD's and video tapes, dealing with persons with developmental disabilities, and a range of social issues. Available online at: http://www.diverse-city.com/.

Impact: Issue on Violence Against Women with Developmental or Other Disabilities (2000). Research and Training Center on Community Living, University of Minnesota. Available online at: http://ici.umn.edu/products/impact/133/default.html.

Learning to Act in Partnership: Women with Disabilities Talk to Health Professionals. Rehabilitation Institute of Chicago, Health Resource Center for Women with Disabilities. (2001). VIDEO 38 mins.

Sexuality and Reproductive Health

A prospective study of menopause in women with Down syndrome. Seltzer, G. B., Schupf, N., & Wu, H. S. (2001). Journal of Developmental Disability Research, 45 (1), 1-7.

Breast Health Access for Women with Disabilities (BHAWD). Alta Bates Summit Medical Center. Available online at: http://www.bhawd.org.

Diverse City Press. Diverse City Press Inc. produces and distributes inspiring and informational books, audio CD's and video tapes, dealing with persons with developmental disabilities, and a range of social issues. Available online at: http://www.diverse-city.com/.

Gynecologic Care of Women with Developmental Disabilities and Other Special Needs. David Blair Toub, M.D., and James W. Nettleton, M.D., Ph.D. Available online at: http://www.obgyn.net/displayarticle.asp?page=/ENGLISH/PUBS/FEATURES/special_needs.

Learning to Act in Partnership: Women with Disabilities Talk to Health Professionals. Rehabilitation Institute of Chicago, Health Resource Center for Women with Disabilities. (2001). VIDEO 38 mins.

Let's Talk about Health: What Every Woman Should Know - The GYN Exam. The Arc. A video on the breast and pelvic exam, developed just for women with developmental disabilities.To order call: (888) 368-8009. Available online at: http://www.thearcpub.com.

MammaCare. A system for teaching breast self-examination has adapted personal learning systems women with disabilities including women who are blind and deaf. 930 NW 8th Ave., Gainsville, FL 32601. Phone 800/MAMCARE (626-2273). Available online at: http://www.mammacare.com.

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

"Table Manners and Beyond” The Gynecological Exam for Women with Developmental Disabilities and Other Functional Limitations. Available online at: http://www.bhawd.org/sitefiles/TblMrs/cover.html.

The Committee on Sexuality: Advocating for People with Developmental Disabilities. The Committee puts out a newsletter, produces a symposium, and advocates for the sexual rights of people with developmental disabilities. Available online at: http://www.w3ddesign.com/committee.

The Enemy Within, The Battle Without: Fighting for Accessible Services to Beat Breast Cancer. Rachel Ross. Available online at: http://www.4woman.gov/editor/aug99/aug99.htm.

The Gynecological Exam for Women with Developmental Disabilities and Other Functional Limitations. Disabled Women's Sexual and Reproductive Health Resource Packet. Available online at: http://www.empowermentzone.com/repropak.txt.

The Midlife Health Needs of Women with Disabilities. Marina Morrow. British Columbia Centre of Excellence for Women’s Health. Available online at: http://www.bccewh.bc.ca/PDFS/challengesofchange.pdf.

The Patient with Mental Retardation: Issues in Gynecologic Care and The Patient with Physical Disabilities. McNeil Continuing Education Monographs (1996). Contains tips and tools for direct GYN care. Pictures positioning techniques for both the physically and developmentally disabled woman. Videos are also available. Available directly from Ortho-McNeil Pharmaceutical representative.

The Patient with Mental Retardation: Issues in Gynecologic Care. Available online at: http://www3.utsouthwestern.edu/cme/endurmat/gyn_ment/index.htm.

Women First: Breast Health for Women with Developmental Disabilities. Wyoming Institute for Disabilities. Available online at: http://wind.uwyo.edu/breasthealth/handbook.htm.

Women with Disabilities: Health, Reproduction, and Sexuality. International Encyclopedia of Women: Global Women's Issues and Knowledge. Hershey, L. (2000). Routledge Press. Available online at: http://www.cripcommentary.com/women.html.

Access and Barriers to Health Services – Experiences with Health Professionals

A Provider's Guide for the Care of Women with Physical Disabilities & Chronic Medical Conditions. Sandra Welner. Available online at: http://www.fpg.unc.edu/~ncodh/Providerhtml.html.

Access to Preventive Health Care Services for Women with Disabilities. Association of State and Territorial Health Officials (ASTHO) (2003). An overview of some of the major barriers to accessing preventive health care that women with disabilities face and provides actions state public health agencies can consider pursuing to eliminate these barriers. Available online at: http://www.astho.org/pubs/WomenwithDisabilitiesFactSheet2.pdf.

Breaking Down Barriers to Health Care for Women with Disabilities (December, 2004). National summit highlighting the many challenges facing women with disabilities in obtaining appropriate health care and explored ways that health professionals and facilities can overcome these barriers to provide the best possible care. The Office on Disability and the Office on Women's Health at the U.S. Department of Health and Human Services, in partnership with the Interagency Committee on Disability Research (ICDR). Available online at: http://www.tvworldwide.com/events/hhs/041206/.

Center for Disability Issues and the Health Professions (Western University of Health Sciences). Information on accommodating students with disabilities who are training to be health providers, ADA compliance, assistive technology, communication access, Web site accessibility, disaster preparedness for people with disabilities, educating health professionals on disability issues, history of disability and the health professions, and profiles of people with disabilities in the health professions. Available online at: http://www.westernu.edu/cdihp.html.

Diverse City Press. Diverse City Press Inc. produces and distributes inspiring and informational books, audio CD's and video tapes, dealing with persons with developmental disabilities, and a range of social issues. Available online at: http://www.diverse-city.com/.

Health Access for Women with Disabilities. New Jersey Developmental Disabilities Council. Available online at: http://www.njddc.org/womenshealth.htm.

Health services for women with disabilities: Barriers and portals. Gill, C.J., Kirschner, K.L., & Panko-Reis, J. (1994). In A. J. Dan (Ed.) Reframing Women’s Health (pp. 357-366). Thousand Oaks, CA: Sage Publications.

Informed Consent, Sexuality, and People with Developmental Disabilities: Strategies for Professional Decision-Making. Laura K. Griffin, J.D. Includes examples and discussions of many informed consent scenarios. Address: 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.

Learning to Act in Partnership: Women with Disabilities Talk to Health Professionals. Rehabilitation Institute of Chicago, Health Resource Center for Women with Disabilities. VIDEO 38 mins. (2001).

ORCHID. This special issue health and wellness magazine for women with disabilities focuses on achieving wellness, not removing disability. Available online at: http://www.fpg.unc.edu/~ncodh/Orchid_health.pdf.

Removing Barriers to Health Care: A Guide for Health Professionals. NC Office on Disability and Health. For a free copy call 919-966-2932 or e-mail http://www.fpg.unc.edu/~ncodh/rbar/.

Resourceful Woman Newsletter. Rehabilitation Institute of Chicago. Address: 345 E. Superior St., Rm 106, Chicago, Il 60611, Phone: 312-238-1051. Available online at: http://www.ric.org/community/hrcwd.php.

Services Denied: Why Women With Disabilities Aren't Screened For Cancer. Haran, C. (2000). Available online at: http://www.bhawd.org/sitefiles/denied.html.

Women Be Healthy: A Curriculum for Women with Mental Retardation and Other Developmental Disabilities. North Carolina Office on Disability and Health. A curriculum was developed to enable women with mental retardation and other developmental disabilities to become more active participants in their health care, with an emphasis on teaching women about reproductive health and breast/cervical cancer screenings. Available online at: http://www.fpg.unc.edu/~ncodh.

Women’s Issues: Disabled Women and the Right to Health Care. Theresia Degener. Available online at: http://www.disabilityworld.org/Aug-Sept2000/Women/HealthCare.htm.

Disabled Women's Organizations

The Disabled Women's Network
Health Resource Center for Women with Disabilities, Rehabilitation Institute of Chicago
Breast Health Access For Women with Disabilities (BHAWD)
The National Women's Health Information Center (NWHIC): Women with DisAbilities
Women with Disabilities - Australia (WWDA), Information on issues related to women with disabilities.
Through the Looking Glass, Services, adaptive equipment and peer support for parents with disabilities, including parents with developmental disabilities.
Center for Research on Women with Disabilities (CROWD), Research and related health information for women with physical disabilities.

Funded by the United States Department of Education, Office of Special Education, and Rehabilitative Services, National Institute on Disability and Rehabilitation Research, Cooperative Agreement #H133B031134.

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