Women with disabilities face great challenges.  Is access to appropriate information and services relating to breast health one of those challenges?

This question kept popping up at the Women’s Cancer Resource Center (WCRC).  Reports of a lack of screenings, concerns about clinic accessibility and sensitivity of clinic personnel, and a lack of education about breast cancer led WCRC to look further.  In January 2001, WCRC started a first-of-its-kind inquiry called The Breast Health Access for Women With Disabilities Project.

WCRC, along with four other Minnesota organizations (The Minnesota Breast and Cervical Cancer Screening Program; The Metropolitan Center for Independent Living; Arc Anoka, Ramsey and Suburban, Inc.; and Stratis Health), undertook a year-long research project involving person-to-person interviews, questionnaires, a literature search, and user statistics.  Their findings confirmed most of the original suspicions.  Some key conclusions are:

· Fewer than half of the women with mental retardation have any knowledge of breast cancer or how to do a self-exam.  There’s a great need for education, and better written or visual information for these women.

· Getting onto an exam table or standing for mammograms is a challenge in some clinics.

· Allowing extra time to do clinical exams was a concern.

· There is little targeted outreach to women with disabilities in the metro area.

· In residential settings, such as group homes, policies require regular breast self-exams but the policies are not always followed.

· Minnesota Medicare statistics for women 65 to 75 show disabled women are less likely to have had mammograms (56.8%) than nondisabled women (67.2%), a significant disparity.  There are also regional differences, with northwest and southeast counties showing higher mammography rates. Central and metro counties report lower rates.

· For the 50 to 67 age-group, there’s a large disparity in mammography rates between women with disabilities who use Medicare (56.3%) and those who have commercial health plan coverage (80% and up).

After reviewing the research, the five project partner organizations met with women with disabilities to plan action steps.  At WCRC, the first will be to identify clinics that are doing the best job in providing services to women with disabilities and disseminating that information.  All other project partners also indicated plans to remedy some of the concerns.

“We are very grateful to the Susan G. Komen Breast Cancer Foundation, Minnesota Affiliate, for funding this new research,” said Ellie Emanuel, WCRC codirector.  “Historically, the national discussion on health care disparities has focused on ethnic and racial trends, generally leaving out women with disabilities.  This is a important step in bringing these women into the discussion.”

This article has been reprinted with permission from Giving Voice, the newsletter for the (WCRC).  For updates on this project, please contact WCRC at 612-822-4846 or [email protected].