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4.1. Relevant articles
Article from New Mobility (May 2011)
Esther Jones, a power wheelchair-user from the Bronx, N.Y., who lives with numerous disabilities including diabetes and arthritis, spent years fearing for her health and well-being, but was unable to do much about it. Jones, whose mom had been diagnosed with breast cancer, knew the importance of yearly mammograms. The only problem was she couldn't get one.
"For someone who lives with a disability, doctor visits can be extremely uncomfortable physically and mentally. There's nothing worse than being turned away when you know you need exams that are supposed to be routine, because the facility or equipment can't accommodate you," says Jones.
Despite these barriers, Jones still tried to get mammograms and other important tests such as pap smears, but they were far from routine bordering on inhumane. And each time she had to prepare to be handled like a rag doll, her body twisted and pulled at the hands of health care staff with limited training in assisting people with disabilities and, worst of all, a lack of sensitivity.
"Just to get onto an exam table for some tests was a battle. To get a mammogram, I'd have to stand up for long periods of time although I can't even walk and have my breasts mashed and stretched by the technicians. It was very stressful for me," she adds.
Unfortunately Jones' health care experiences are far from uncommon. Despite the passage of the Americans with Disabilities Act in 1990, many women with physical disabilities especially those who use wheelchairs are not only unable to access breast exam equipment, but many health care facilities that use them. This has led to women with disabilities receiving fewer clinical exams than women without disabilities, resulting in a greater risk of serious illness and death.
Common barriers that prevent women with physical disabilities from receiving diagnostic tests such as mammograms include exam rooms, dressing rooms and bathrooms at healthcare facilities that are too small to accommodate wheelchairs; no Hoyer Lifts to transfer wheelchair users to exam tables; health care staff unfamiliar with treating people with disabilities; and blatant discrimination.
"No woman should feel powerless to improve their health. I'm sure a lot of women who have disabilities would like to get mammograms but don't even bother because they are treated so poorly," says Jones.
According to the Centers for Disease Control and Prevention, aside from non-melanoma skin cancer, breast cancer is the most common cancer among women in the United States. It's also one of the leading causes of cancer death among women of all races. Most health care professionals will tell you, early intervention is critical to surviving this disease. So why aren't these exams accessible to all.
It's a question Independence Care System a New York City-based nonprofit organization committed to assisting people with disabilities has been trying to answer for quite some time. In 2008, ICS launched its Breast Cancer Screening Project for Women with Physical Disabilities, with funding from the Greater New York City Affiliate of Susan G. Komen for the Cure. The project, now in its third year, is designed to create and test a health care model that would increase access and reduce barriers to breast cancer screening for women with physical disabilities.
Among its female members, 85 percent of which are over the age of 40, ICS found that some had never had a mammogram, or had such a bad experience that they never returned for follow-up care.
Dr. Susan C. Wolf, clinical director of Access to Women's Health Care at ICS, who is coordinating the project, is familiar with the barriers women face when trying to receive breast exams.
"In my practice I saw many women with disabilities. After sending these women for mammograms I would get a report back saying, 'limited study' or 'due to patient's disability, entire breast could not be visualized.' I have to assume that if the entire breast could not be visualized this year, it was probably not visualized last year or the year before that," explains Wolf. "And there's no best practice for the radiologist to recommend an alternative exam, such as ultrasound or MRI, or to document the areas of a patient's breast that could not be visualized from year to year."
Further, women with disabilities have functional limitations that can hinder their ability to negotiate a screening mammogram. Some women cannot move their upper bodies, hold their backs straight, lift their arms, grasp, or lean. Some cannot stand or, due to tremors or spasms, stand still.
One major issue identified by ICS is the reluctance of health care facilities to change their policies. For instance, Velcro straps could potentially help many women who cannot move their upper limbs access screening equipment, but these are seen as "restraints" and not permitted.
Solutions in Progress
One of the primary goals at ICS is to partner with health care facilities in New York City to provide improved breast cancer screening for women with disabilities. Two facilities have joined the project New York Presbyterian Hospital-Columbia University Medical Center and the Breast Examination Center of Harlem. ICS provides disability awareness and sensitivity and technical training to staff at both facilities, as well as ongoing consultation.
Presently, ICS has coordinated initial screening mammograms for 42 women, including Jones, who is a member, at its partner facilities. It is using data gathered from these exams to make the screening process easier and less time-consuming. So far, the project's preliminary findings point to three areas that could improve the efficiency of mammography screenings:
1. Reduce the average time to screen women with disabilities from over 30 minutes as recent data shows to the 15-minute standard reimbursable time.
2. Ensure women with disabilities have a sufficient number of technologists available to assist with exams. This may require enhanced reimbursement rates by Medicare, Medicaid and private insurers for the extra time and staff required.
3. Improve the overall accuracy of breast cancer screenings of women with disabilities. Address the problem of breast tissue not being visualized properly due to inaccessible equipment and a lack of best practices.
In 2012, as part of the Affordable Care Act, the U.S. Access Board will submit its recommended standards for medical diagnostic equipment in doctors' offices and other medical facilities to be considered accessible for people with disabilities including wheelchair users. Diagnostic equipment covered by the new standards will include: examination tables, examination chairs (including chairs used for eye examinations or procedures, and dental examinations or procedures), weight scales, mammography equipment, x-ray machines, and other radiological equipment commonly used by health professionals.
United Spinal Association, which has partnered with ICS to raise awareness of health care issues facing women with disabilities, recently presented testimony in Washington, D.C., urging the Department of Justice to more strictly enforce current ADA regulations to ensure that the needs of people with disabilities in medical care facilities are adequately accommodated.
Each year, United Spinal Association and ICS host a conference in the New York City metropolitan-area for women living with disabilities. The conference, which is free and open to the public, includes workshops on self-image, parenting, fitness and nutrition, dating and socializing, relationships, abuse and domestic violence, and breast health care.