Health Magazine

Fotgotten Sisters…Breast Screenings for Women Having Physical Disabilities

Posted on the 03 May 2011 by Jean Campbell

How easy is it to get a mammogram if you have physical disabilities that limit your mobility?

It is often so difficult that many women with physical disabilities, especially wheelchair users, don’t often get mammograms, if at all.

It has been more than twenty years since the Americans with Disabilities Act passed and still there are great disparities in health care access and delivery for women with physical disabilities, especially when it comes to annual screenings for breast and gynecological health.

For most of us, getting a mammography is a two step process. First we call and make an appointment; then we keep the appointment.

Rarely is this the case for a woman using a wheelchair. The barriers she faces when trying to get a mammogram are very real. They run the gamut from limited space in a mammography screening room for a wheelchair, to inaccessible changing rooms and bathrooms, to a staff not trained or comfortable positioning both a mammography machine and a woman with a physical disability. It takes extra time, patience, and a skills set to administer a screening while a woman remains in her wheelchair.

Even those facilities that are accessible are often times reluctant to accommodate women with physical disabilities. It can take more than one staff person to do a screening and often times takes longer that the standard reimbursable time allotted by insurance.

Many women with physical disabilities live on a limited income from Social Security Disability and Medicaid is their primary medical coverage. They do not have a private physician. There care options are limited.  They get their medical care at hospital clinics and /or free-standing health centers in their communities. Many times these facilities are not equipped to accommodate them for mammograms.

logo for Independent Care System
A few weeks ago, I came across a study conducted by Independence Care System (ICS) a nonprofit organization operating as a Medicaid managed long-term care plan assisting people with disabilities to live independently in the New York City boroughs of Manhattan, Brooklyn and the Bronx. In April of 2008 ICS launched its Breast Cancer Screening Project for Women with Physical Disabilities. A pilot project, it was designed to create and test a model that would have as its goal increasing access and reducing barriers to breast cancer screening for women with physical disabilities. What follows is a summary of the outcomes of the project to date. The entire report can be found by going to http://www.icsny.org/building-a-community/access-to-womens-health/

During its first two years, the period covered by the report, the project (now in its fourth year of funding from the Greater NYC Affiliate of Susan G. Komen for the Cure®), has:

• Secured two partners – New York Presbyterian Hospital-Columbia University Medical Center, a provider site of the Columbia University Breast Cancer Screening Partnership Program, and the Breast Examination Center of Harlem, a program of Memorial Sloan Kettering Cancer Center. These sites are collaborating with the Project and providing mammography screenings.

• Provided disability awareness and sensitivity training to all staff at both mammography facilities; technical training to medical and technical staff; and ongoing consultation.

• Worked with facility staff to implement innovative methods to make screening easier (e.g., using Velcro straps and/or pillows to facilitate positioning); identified impediments to screening (e.g., motorized wheelchairs without retractable or removable armrests) and found solutions (providing a substitute chair); and gathered intake information in advance to facilitate  women’s exams.

• Coordinated initial screening mammograms for a total of 42 women at partner facilities, including providing comprehensive, disability-competent, patient navigation services and a Nurse Educator/Clinical Assistant.

It is the goal of ICS to expand the number of partners in coming years to allow for increasing the numbers of women that can be screened each year, both new women and those returning for annual screenings.

Marilyn Saviola, who directs the project for Independent Care System, says this is a program suitable for replication nation-wide. In our conversation Marilyn shared, “I am happy to speak to anyone interested in learning more about the program and how to replicate it. There is such a need to make mammograms accessible for women with limited mobility. No one knows how many women with physical disabilities could have been saved if more mammography facilities were accessible to people who use wheelchairs or other mobility aides.”

For further information about Independence Care System’s Access to Women’s Health Care Program or the Breast Cancer Screening Project for Women with Physical Disabilities, please contact Marilyn Saviola at (212) 584-2587 or Marissa Kaplan at (212) 420-6661 or mkaplan@icsny.org.

Note from Jean Campbell –Wherever you live, please take the time, the next time you go for a mammogram, to ask your provider if they are wheelchair accessible. If so, ask if they are willing to serve women with limited mobility. If the answer is yes,  Please email me the name of the mammography site and I will post it as a resource on this site.


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