Women with disabilities, including autism, face challenges similar to their male counterparts, with one clear difference. Men don’t have to face women’s health exams and mammograms.
All too often for women with disabilities as well as their families and caregivers, these procedures produce such anxiety and fear that these women are routinely sedated to complete gynecological exams, or—even worse—they avoid these exams and mammograms altogether.
“Preparing women for these exams is a critical factor in their success,” said Dr. Maricar Belicena, an internist and medical director for Practice Without Pressure, Inc. (PWP). “But that process of preparation needs to start far earlier than the actual appointment—and not just with the patient, but with family members and caregivers as well,” she added.
Studies show that women with disabilities face a higher risk for post-menopausal health disorders as well as for cervical and breast cancer in part because they do not have routine gynecological exams or mammograms. In one study, breast cancer alone accounted for 13 percent of deaths among women with disabilities over a 10-year period. Fear of these procedures themselves or of being sedated for them contributes to this outcome, but just as pervasive and no less important, is the attitude of family members and caregivers about the need for such exams.
“The concept of women with disabilities having sexual parts is a challenge in our community,” said PWP’s Deborah Jastrebski, founder and chief executive officer of the Delaware non-profit. For parents and caregivers, she said, the prospect of dealing with those issues, when often the challenges of daily living are hard enough, gives them pause—and often that pause can last decades.
There’s also the justifiable worry that the exams will be difficult and scary. And neither parents nor caregivers want to put a woman in their care in a situation where she will feel mistreated, no matter what the intent. As a result, parents and professional caregivers often feel unprepared to support women or teens with disabilities as they face those exams. It’s a wonder, under those circumstances, that women with disabilities receive these exams at all.
At PWP’s Practice & Procedure Center in Newark, Delaware, women with challenges do learn to complete gynecological exams without fear and without sedation. “Teaching family members, support staff, and even the women themselves to have higher expectations and providing tailored training that meets the diverse needs of female clients and their families or staff makes all the difference,” Jastrebski said.
“Through PWP’s Practice Model™, individuals learn all the elements of a women’s health exam or mammogram and practice those steps until they are comfortable and ready to complete those steps independently during an actual exam,” Jastrebski said.
“It can be an eye-opening experience for caregivers and family members as well as healthcare professionals who see a person succeed in ways they never thought possible, and who find through our training how to best support that woman during these exams,” Belicena said.
Added Jatrebski, “We bring confidence to both the women facing these exams and the people who support them.”
Patsy Gardner led the way. “We started our women’s health program for Patsy, who came to us with a significant fear of women’s health exams,” recalled Karen Bashkow, PWP’s director of programming services. “Patsy, who was 33 when she began to work with us, had been sedated repeatedly and with great difficulty with gynecological exams.”
“The group home staff that supported her was willing to try anything to reduce the fear she felt during these procedures. We offered a method of practice before treatment that gave Patsy the skills she needed to complete these exams without sedation. It took 40 practice sessions for her to reach this level, but she continues to be successful with PWP support. We consider her a true pioneer,” Bashkow said.
PWP’s experience with Patsy and other women led the non-profit to create a Hands-On Learning Experience program 3 years ago that brought women and a family member or support staff together to learn and practice all the elements of a women’s health exam.
Pat Prettyman came to the first HLE program with her granddaughter, Dian. “It was a wonderful experience,” Pat said. “The teaching tools that were used in the course were excellent….It was hands-on, which was much better for these kids than sitting in a lecture hall and having somebody put a slide up. They could get right into it and do it themselves….I have recommended it to many other girls in Special Olympics.”
Bashkow, whose son, Ben, has autism, knew from experience that traditional approaches would not engage or entertain her audience. “Instead, during our four 1-hour sessions, we took a very unconventional, but effective and fun approach to this material,” she said. “We brought the exam room to the classroom and gave participants an opportunity to practice, fully clothed, the basic elements of a women’s health exam. In that way, we demystified the process and the tools used during an actual exam and brought to ladies a comfort level that often led to profound change.”
That was certainly the case for Pam Slack, a woman in her 40s. She had always been sedated for care. Initially, she was so afraid that she swore at Bashkow and Jastrebski and wouldn’t even stay in the room for the first class. But she came back every week. By the third class, she agreed to participate in a practice session on the exam table, which she did with great dignity and resolve. One month later, she completed her first women’s health exam without sedation. Since then, she has completed her annual gynecological exam as well as a breast exam and ultrasound without sedation.
The program has evolved as well. Practice Without Pressure now includes a mammogram component to its Hands-On Learning Experience. Through partnership with the Breast Center at Christiana Care Health Systems in Newark, Delaware, PWP provides a demonstration of actual mammogram equipment as well as mammogram practice cards as part of its women’s health care training.
This past June, PWP took its Women’s Health Initiative to another level. Practice Without Pressure created and launched a “Treasure Your Health” campaign during the Special Olympics – Delaware Summer Games June 11-12 at the University of Delaware. As part of the Special Olympics Delaware (SODE) Healthy Athletes program, this “Pink Tent Event” sought to bring basic breast health information to teens and women with disabilities and to reframe opinions about the value of these exams for women with disabilities. The event, which was supported by SODE as well as by Susan G. Komen for the Cure – Philadelphia Affiliate, attracted more than 700 people.
Said Ann Grunert, executive director of SODE, “There is a breast cancer diagnosis every 3 minutes in this country, and this disease doesn’t discriminate between those with intellectual disabilities and those without. We need to empower all women against this disease, and by addressing the special needs of our athletes, Treasure Your Health is helping to make that happen.”
In the meantime, Practice Without Pressure continues to provide fearful clients such as Susan Kandler (see following page) with the opportunity to practice procedures before treatment and receive treatment when they are ready at its Newark, Delaware, location. It is the only facility that offers not only practice before treatment but also actual treatment in women’s health exams, blood draws, dental care, nail care, and hair care. Insurance, both public and private, covers treatments. While practice sessions are not currently covered by insurance, PWP is working with Medicaid to rectify the situation. However, the State of Delaware does cover the cost of practice sessions for selected treatments, and this helps clients within the state service system receive much needed training and treatment they would otherwise not be able to afford.
“People, no matter what their age or perceived ability, have the right to receive care without restraints and with dignity and respect,” said Jastrebski. “Because we believe in them, they trust us, so that together, we can help them to better health and quality of life. For the people we serve, Practice Without Pressure makes perfect sense.”
Peace of Mind and Body through Women’s Health Exams
Susan Kandler’s mother thinks that if life had been different, Susan would have been a stand-up comic. “She has an innate ability to store little phrases and catalog them. She’ll bring them out in a situation that hits the nail on the head,” said Joan Kandler of Wilmington, Delaware.
But for 47-year-old Susan, diagnosed with brain damage and a seizure disorder, women’s health exams were no laughing matter.
Recalled Joan, “She did have a women’s health exam when she was much younger and was not sedated for it at the time. But we had to hold her arms. Even breast exams were always problematic. We’d get so far into the room where the machinery was, and then she wouldn’t go any farther into it.”
When Susan moved to a group home, her resistance increased. Two years ago, she ended up having to be sedated to complete a women’s health exam.
In fact, Susan viewed all healthcare visits with suspicion. “We’ve always had problems even having her go to a doctor’s office and the hospital. We never knew if she would get out of the car, go into the elevator, and then leave the office at the end,” Joan recalled.
Not surprisingly, Susan’s unpredictable response to situations made such visits difficult. “You could never be sure which Susan would show up: ‘the willing Susan or the unwilling Susan,’” Joan said. The unwilling Susan “could never go to the doctor’s appointment because she wouldn’t even leave the house.”
Judy Little, RN and healthcare coordinator at Community Systems, Inc., where Susan lives, faced the same struggle. “I can’t tell you how many visits we had to cancel when she wouldn’t go during her stuck periods. You’d have the appointments, but she wasn’t able to leave her home, or if we got there, we couldn’t get her out of the car.”
Fear of the unknown played a role in her self-imposed isolation. “Transitioning has always been difficult for Susan,” Joan said. “She has an underlying fear of where am I going, what am I doing, and putting two and two together.”
She also has sensory challenges. “Susan is very resistant to being touched. You have to approach her with humor and one-on-one in a non-threatening way, otherwise she is very defensive,” her mother said.
Practice Without Pressure appealed to Joan and to group home staff because it offered an approach that was cooperative and not coercive. “The purpose of the program is to bring down the defenses and teach someone that what you’re going to do is not harmful. Repetition is always good,” Joan said.
LaConya Wesley, program manager for Community Systems, Inc., went with Susan to her first practice session at PWP in August of 2010. “When we first went in, they explained the procedure and the use of cards for review. Susan was calm, and as we were looking through the cards, she was standing and watching what we were doing. She eased into it,” LaConya said, and she learned through repetition and practice what they expected of her.
After just six practice sessions, Susan completed a women’s health exam at the PWP Practice & Procedure Center without sedation and with ease. “It didn’t take very many practices. I was really surprised,” LaConya said. Judy Little agreed. “I’m thrilled at the outcome.”
Joan Kandler was ecstatic. “It’s like Susan won the Nobel Peace Prize,” she said, laughing.
Credit careful practice as well as the comfort and trust Susan felt with PWP staff. “If she trusts you, she will walk off a cliff holding your hand,” said Joan. “But if she doesn’t trust you, she’s not going to cooperate. She has radar where she can figure out whom to trust and whom not to trust. It’s almost a litmus test,” her mother said.
It helps to sing too. Dr. Belicena knew from Susan’s history that she found the song, “Wheels on the Bus” to be soothing. Karen Bashkow, RN and PWP program director sang the song as the women’s health exam progressed, adding her own lyrics when her memory failed her. Susan didn’t seem to mind her creative license.
“We were done before we knew it,” Belicena said.
From Age of Autism