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HIGHLIGHTS FROM THE JANUARY 1999 CONFERENCE

INCREASING BREAST HEALTH ACCESS FOR
WOMEN WITH DISABILITIES

TOPICS


Introduction and Conference Purpose
Access to Breast Health for Women with Disabilities - A Neglected Issue
Issues of Access and Their Consequences
Efforts to Increase Disabled Access to Breast Screening
Partnerships to Increase Access
Wrap-up and Looking Ahead


Introduction and Conference Purpose

Linda L. Davis, Chair, Conference Planning Committee, Co-Chair, Bay Area
Affiliate Grants Committee, The Susan G. Komen Breast Cancer
Foundation, and Management and Communications Consultant

The Bay Area Affiliate of The Susan G. Komen Breast Cancer Foundation was pleased to co-sponsor the Increasing Breast Health Access For Women With Disabilities Conference on January 15, 1999 in Berkeley, California. In partnership with The Community Health in Focus Program of The Robert Wood Johnson Foundation and with support from The Hearst Foundation, the conference brought together over 125 leaders with diverse backgrounds from throughout the greater San Francisco Bay Area, and beyond, to address this issue.

Many national, state and local initiatives have been undertaken to promote breast screening to help detect beast cancer at an early stage when treatment is most effective. Nevertheless, women with disabilities have been widely neglected in these efforts. By providing a forum to share information and exchange ideas, our goal for this event was to help prepare the participants to provide leadership in improving access to breast screening for women with disabilities by

We are grateful to the Community Health in Focus Program, The Hearst Foundation, the speakers, and the many individuals and organizations whose contributions made this conference possible. We thank the participants for their enthusiasm and their willingness to share their knowledge and experience. We applaud the spirit of collaboration, good will and commitment that permeated the room throughout the day. We look forward to learning about the partnerships and programs that develop and expand in our communities.

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Access to Breast Health for Women with Disabilities - A Neglected Issue
Keynote address
Wanda K. Jones, Dr.P.H., Deputy Assistant Secretary for Women's Health,
Director of the Office on Women's Health, U.S. Department of Health and
Human Services

Dr. Jones set the tone for the conference, raising themes and issues repeated by speakers throughout the day. Among these were possible differing risk factors for breast cancer, barriers limiting access to breast health, and lack of reliable data about women with disabilities.

Access to money is a problem in breast health for women with disabilities, but "not the whole piece of the picture," Dr. Jones said.

"And architectural barriers are not the only roadblocks to breast health for women with functional limitations," she said. Other challenges include:

Among factors that could increase the risk of breast cancer among women with disabilities, Dr. Jones cited differences in exercise and nutrition, prolonged use of medications, more frequent exposure to X-rays and differences in child-bearing histories. Prospective studies could be important in determining the existence of differing risk factors, she added.

Dr. Jones called lack of data "a stumbling block to addressing issues of breast health for women with disabilities." Neither the National Cancer Institute nor the California Tumor Registry collects information on disability, she said, and breast screening for women with disabilities is not included in the Healthy People 2000 objectives.

Until this conference, Dr. Jones said, advocates for breast cancer and for women with disabilities had not crossed paths.

"Data is what drives us," Dr. Jones said. "The problem we deal with is invisibility. We can't assume that no data means no problem."

According to Dr. Jones, research shows that, for women with disabilities, access to mammography decreases as age and the number of functional limitations increase.

She cited a recent study of women over age 40 that found an eleven percent (11%) difference in mammography rates between women with no functional disabilities and those with three or more. Only 55 percent of women with one or two functional limitations and 50 percent of women with three or more disabilities had had a mammogram within the last two years.

Among women age 65 and older, the study found 57 percent of those with no functional disabilities had had a mammograms within the past two years, compared with 52 percent of women with one or two disabilities and 43 percent of those with three or more.

Statistics indicate more than 10 million women nationwide are limited by some disabling condition, Dr. Jones said, including more than 17 percent of women living in Alameda County, California. Those conditions include orthopedic problems, osteoarthritis, deafness, hearing and speech impairment, paralysis, cerebral palsy, multiple sclerosis, muscular dystrophy, spina bifida and cystic fibrosis.

Progress is being made. Efforts include work on imaging technology, such as hand-held equipment that could allow for in-home mammography. "There is the possibility in our lifetime of remote-site treatment," Dr. Jones said.

The Office on Women's Health is working with the U.S. Department of Education on an international conference on women with disabilities. Four regional conferences are also in the early planning stages.

A chapter on people with disabilities has been included in the Healthy People 2010, although there is still no specific objective on access to mammography for women with functional disabilities.

The U.S. Department of Health and Human Services is considering community level centers of excellence based on the academic health center model that recognizes 18 national centers of excellence, Dr. Jones said. The community-level model has served women well and may be closer to what people need, she added.

"The timing is good for us to move forward," Dr. Jones said, citing high awareness and the commitment of the current administration to eliminating all disparities.

Dr. Jones emphasized the importance of raising the sensitivity of the medical community to the needs and perceptions of women with functional disabilities. She cited anecdotal responses to a 1998 study conducted in North Carolina that asked women with disabilities about their gynecological health care experiences. Respondents called their experiences embarrassing and humiliating. Representative comments included:

"A certain amount of education is needed about what strengthens a woman's self image - being listened to, having some control over her life, including health care decisions," Dr. Jones said. "Our challenge is to institutionalize the message that women with functional disabilities are women first, period. Disabilities do not negate the need for breast and gynecological health, issues of adolescence, fertility, birth control, pregnancy or menopause

"Building partnerships and taking action at the local level are essential in working for better access to breast health for women with disabilities," Dr. Jones stressed. "Federal agencies can't do it all."

"There are some very enlightened elected officials working to solve these problems," Dr. Jones said, stressing the importance of working with those individuals to push this agenda. "We are dependent on goodwill at local levels. Programs have been cobbled together by national and state funding and through collaborations with corporations and foundations. We're going to see continued cobbling together."

"Breast Health Access for Women with Disabilities (BHAWD) is a tremendous model of a community-based solution. I know of no other community model quite like it," Dr. Jones said, emphasizing BHAWD's culture of partnership. As a way of demonstrating partnership, she announced that a hyperlink is being developed between BHAWD and the Department of Health and Human Services Web sites.

Issuing a challenge to women to empower themselves in striving for better access to breast health, Dr. Jones concluded by quoting author Maya Angelou: "If one is lucky, solitary fantasy can totally transform one million realities.

For more information, visit the national Women's Health Information Center Web site at www.4women.gov or call 1-800-944-WOMAN

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Issues of Access and Their Consequences
Research demonstrates barriers to access
Ann Cupolo Freeman, M.A., M.S.W., Berkeley Planning Associates

Freeman described research conducted by Breast Health Access for Women with Disabilities (BHAWD) to determine the need for a breast health education and early detection program targeting women with physical disabilities in Alameda and Contra Costa Counties. The 1996 study was funded by a planning grant from the Avon Foundation.

Using two comparable surveys, the study collected information about barriers to breast health services from both physically disabled women advocates and from social services and health care providers.

"In many instances, both groups reported the same barriers," Freeman said. Among those barriers were inaccessible exam tables, lack of assistance with transferring and dressing, and being made to feel like a burden.

Disabled women advocates mentioned problems with transportation and a lack of extra time needed for transferring.

Inaccessible medical offices and lack of understanding from families or care givers were among barriers cited by health care and social services providers. Women with cognitive disabilities also experienced problems making appointments, providers said.

Both groups reported inaccessible mammogram equipment and being made to feel like a burden as barriers to mammography. Disabled women also frequently reported difficulty with positioning and/or balancing while trying to use standard mammogram equipment. Providers said women with physical disabilities may be refused mammography treatment.

Both groups reported the following barriers to breast self-examination:

"The study underscored the need for a breast health education and early detection program and an outreach strategy targeting women with physical disabilities," Freeman said. "It added credibility to BHAWD's development of such a program to serve women in Alameda and Contra Costa Counties."

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The importance of outreach
Kathleen Lankasky, United Cerebral Palsy, BHAWD

Statistics highlight why United Cerebral Palsy got involved in BHAWD's breast health education and early detection program, Lankasky said. Of the women with cerebral palsy Lankasky interviewed, 80 percent reported not getting adequate obstetrical and gynecological care, 50 percent had been denied

care and 33 percent had never had care.
These statistics demonstrate the emotional and attitudinal barriers to care that exist on the part of both potential clients and health care technicians.

"Partly these are based on old perceptions that women with disabilities are not sexual," Lankasky said. "We need to educate women that they're women first. If they have been taught to negate their sexuality, they don't think about their sexual parts."

The challenge for BHAWD and other programs is the need to educate "layer after layer after layer of people." Efforts to education people living in group homes, for example, led to the discovery that education for those individuals' care givers and families was also necessary. "For every woman we get into the (BHAWD) clinic, we have to educate four or five," Lankasky said.

A further challenge is that women with disabilities don't typically congregate at places the way other groups of women do, making contact more difficult. Education requires a one-on-one approach that is very time-consuming.

"Outreach is the most challenging part of developing our BHAWD clinic,"
Lankasky said. "It will always be a central theme of our program.

Lankasky emphasized BHAWD's partnership approach to women's health care. In providing breast health care to women with disabilities, she said, "We're treating them and they're teaching us."

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A personal perspective on access and its consequences
Judith Rogers, O.T.R., Through the Looking Glass

Rogers spoke from her experiences both as a woman with disabilities and a breast cancer survivor.

"I considered myself well-informed," she said of her battle with breast cancer. "In reality, I was not."

Rogers said she should have pushed harder for treatment when she first observed dimpling in her breast through self-examination. The first mammography done after she noticed the dimpling was negative. It took a year to diagnose her cancer.

"There is not one test that is 100 percent accurate and definite," she said. "Mammography has a 10-15 percent error rate."

For many women with disabilities, the pain of mammography sets off involuntary movement, Rogers related. That movement may damage the clarity of a mammography image. This factor could have led to 10 years of false negative findings on her own mammograms, she said.

Rogers' experience made her realize the importance of breast self-examination. Many of the women in her breast cancer support group had also discovered their cancers through self-examination, she said.

"Unfortunately many women with disabilities are not able to do their own self-examination," she said, stressing the need for better diagnostic tools.

Many women with disabilities ignore the need for regular breast self-examination, clinical exams and mammograms because they feel "lightening can't strike twice." They believe that, because they already have one or more disabilities, their chance of being struck by a devastating disease like breast cancer is low.

Rogers urged the medical research community to consider factors that could increase the risk of breast cancer for women with disabilities, including not bearing children, not breast-feeding and childbirth after age 30.

The medical community must also consider problems created by chemotherapy in women with disabilities, she said, including weight gain and muscle atrophy resulting from lack of physical activity.

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Efforts to Increase Disabled Access to Breast Screening
Improvements in Equipment and Technique
Sandra Welner, M.D., University of Maryland Health Center

Dr. Weiner, a primary care gynecologist, focused on addressing the gynecologic needs of women with disabilities and chronic medical conditions, after she herself suffered a disabling event.

She designed and patented the Weiner universally accessible examination table, designed to allow patients easy access from their wheelchairs. The table is designed with boots to support the legs during pelvic examination.

Dr. Weiner called the Bennett Contour Mammography System another significant advance in treatment for women with disabilities. The Bennett system can be adjusted so patients do not need to stand during the mammography process. However, she said, there is a need to erase the perception among patients, doctors and technicians that mammography can only be done standing.

Three-dimensional ultrasound techniques to scan for breast tumors are under study and offer hope for women with disabilities, Dr. Weiner said.

"Breast self-examination techniques need to be modified to accommodate women with impaired finger sensation and dexterity or limited arm and shoulder movement," she said. "Women with disabilities may also need more frequent clinical breast examinations to compensate for the fact that they are unable to do self-examinations or get mammograms."

Dr. Weiner also spoke of the need to raise awareness of factors that could increase the risk of breast cancer among women with disabilities. These include:

"Economics and insurance, provider insensitivity and patient overload continue to be barriers to access," Dr. Welner said, "as can the effort necessary to make an appointment."

"When you have a number of other medical problems, mammography is just one more thing," she said. "There's just too much going on."

Health care providers need to treat the whole patient Dr. Welner said, citing a 34 year old paraplegic patient who had never had a gynecologic examination. "She was told that she had enough other problems."

"We have to be our own advocates if we know better," Dr. Welner told conference participants.

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New Models for Treatment
Ann Murphy, M.D., Medical Director
Shasta Community Health Center, Redding, California

The Women's Health Center is a specialty clinic dedicated to providing compassionate, high quality, cost-effective primary health care for women with disabilities and special needs. Another example of a successful partnership, the clinic was made possible by a collaborative effort between Shasta Community Health Center and Far North Regional Center.

Clients include women whose physical disabilities make positioning difficult, women with developmental delays that require special educational preparation, and women with speech and language disabilities. The clinic also provides a supportive atmosphere for victims of rape, molestation and other forms of abuse, and for women with psychiatric impairments.

The Center's individualized services include:

"We have learned that if we educate the clinical staff along with our patients, we go much further," Dr. Murphy said.

"The big obstacle (to care and treatment of women with disabilities) is me," said Dr. Murphy, emphasizing the need for physicians to better understand their patients' needs. Her patients have helped train her, she said.

In April 1999, the Center plans to sponsor a conference and training oriented to clinical teams.

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Improving access through partnership
Mary E. Smith, M.S., C.R.C.
Breast Health Access for Women with Disabilities (BHAWD)

"Partnership is a recurring theme within BHAWD," said Smith, its co-founder.

The program is an innovative collaboration between Alta Bates Medical Center's Comprehensive Breast Center, Alta Bates' Disabled Community Health Clinic, Alta Bates Foundation, Alta Bates Medical Center's trustees, the Center for Independent Living, Community Resources for Independent Living and United Cerebral Palsy of Alameda-Contra Costa Counties. It was founded to design and implement accessible breast health services for women with serious motor, muscular and neurologic disabilities.

BHAWD works to break down educational, logistic and financial barriers that may prevent women with disabilities from obtaining early breast cancer detection, and to increase access to clinical exams, breast self-exams, mammograms and alternative techniques and protocols. It works to raise community awareness about access issues facing women with disabilities, to heighten sensitivity within the medical arena, and to identify public policy issues and advocate for necessary change.

Fund raising and bringing all hospital departments together were among the early program challenges, Smith said. "Many places where we sought money were not convinced of the problem. We had anecdotal but not factual data."

BHAWD Held a 1995 conference with community women to help gather hard data on accessibility issues. The conference was also a tool to provide women with the latest information on breast health.

Key components of the BHAWD's clinic, which opened in April 1997, include

"Equally important," Smith said, "we are in partnership with our clients. We want their feedback on what works for them. There is a phenomenal collaboration within BHAWD, and a willingness to work together through all the issues."

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Partnerships to Increase Access
It's up to us (video)
Margaret A. Nosek, Ph.D., Baylor College of Medicine, Director,
Center for Research on Women and Disabilities

"We are a population that medical science doesn't know what to do with," said Dr. Nosek , herself disabled and an internationally recognized authority on women with disabilities and independent living for persons with disabilities.

Dr. Nosek shared her own experience of being "made to feel like a neutral sex with no expectations that I would marry or have children. My disability was more important than my womanhood," she said. "I wasn't supposed to live this long or this well."

Dr. Nosek shared some of the findings of her four-year national study of psychosocial behaviors of women with physical disabilities, begun in 1992. This was the first scientific examination of the sexuality and reproductive health status of women with disabilities, she said.

The Center for Research on Women and Disabilities, which Dr. Nosek founded and directs, Partnered with the National Institutes of Health and Centers for Disease Control and Prevention to fund the study.

Study results are based on 950 surveys, half of which were completed by women with disabilities, and the other half by their care givers and families.

The study results demonstrate that:

"It's up to us to force our way through barriers, to define our own self-image and productivity, to establish our own relationships and to refuse to accept abuse," Dr. Nosek concluded.


Partnerships essential to grass-roots success (video)
Judith E. Heumann, M.P.H., Assistant Secretary, Office of Special
Education and Rehabilitative Services, U.S. Department of Education

Heumann, the highest ranking individual with a disability in the Clinton administration, emphasized the need to get messages incorporated into the agendas of national organizations.

"All successful grass-roots efforts must partner with state and federal agencies to raise attention (of issues) to the policy level," she said. "You must create more effective partnerships with national organizations."

Heumann also stressed the need to train physicians and technicians in providing breast health care for women with disabilities.

"I know first-hand that not all physicians and technicians are trained or have the right equipment," she said. "Often I've wanted to cancel an appointment rather than have to train one more doctor during that appointment. It's not that doctors don't want to know. They just haven't been trained."

Heumann pledged the support of her office in raising issues of access to breast health care for women with disabilities. Conference participants may contact Beatrice Mitchell in Heumann's office at (202) 205-5465.

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Opportunities for partnership projects
Joann M. Thierry, M.S., M.S.W., Behavioral Scientist, Office on Disability
and Health, Centers for Disease Control and Prevention

"We place a strong emphasis on establishing partnerships in our projects," Thierry said. "Women with disabilities are the most knowledgeable source about their own health care needs. It's important that they participate in all aspects of research and program development."

The Office on Disability and Health was created in 1988 to promote health and quality of life for people with disabilities, and to help prevent disability. In 1997, Thierry said, the office selected women with disabilities as a target needs area and allocated an initial $3 million toward projects in this area.

Thierry gave examples of successful projects her office has undertaken in partnership with other organizations, including:

The Office on Disability and Health is also collaborating with the University of Kansas, Baylor University and Independent Living Centers on a study of barriers to breast screening for women with cognitive disabilities.

In late 1999, the office plans to sponsor a conference on "Promoting the Health and Wellness of Women with Disabilities." Thierry told conference participants that they would receive individual notice of the fall event.

"We are interested in working with you," Thierry said. "Please feel free to call about issues of importance to you."

Conference participants may reach Thierry at (770) 488-7097. They may also visit the Centers for Disease Control and Prevention Web site at www.cdc.gov.

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Wrap-up and Looking Ahead
Carol N. D'Onofrio, Dr.P.H., Conference Moderator and Professor Emerita,
School of Public Health, University of California, Berkeley

As the conference came to a close, Dr. Carol D'Onofrio observed that the day had been rich with information, ideas and friendship. Many barriers to breast health access for women with disabilities were identified and, for some participants, this was a revelation. Descriptions of pioneering efforts to increase access demonstrated some specific ways to make a difference. Discussion of issues that still need to be addressed laid out a challenging agenda for the future.

Action is needed on many fronts. Preparation of a conference report will assist in spreading awareness about the issues to women with disabilities, the agencies that serve them, health care providers, administrators, researchers, policy-makers, grant-making organizations and the media. This is a critical first step in organizing at the local, state and national levels to address the needs and opportunities identified.

Engaging members of these constituencies in analyzing the problem and generating solutions is also important, for the issues are complex. Much is yet to be learned about barriers to breast screening associated with particular disabilities. Because the obstacles are multi-faceted, reducing them will require insights and approaches from multiple perspectives. Women with disabilities must be strong partners in this effort, for as noted repeatedly during the conference, they know their own health needs and what does and doesn't work for them.

More fundamentally, active involvement in problem solving is essential in developing ownership of the issues and empowerment to address them. Although consumers and providers may begin separately, eventually they need to come together, for as Kathleen Lankasky pointed out, women's health care is a partnership. Similarly, local, state and national initiatives need to be linked together so that each level can benefit and learn from the other.

The importance of partnerships was emphasized throughout the conference. Collaboration is needed to generate data about issues of beast health access, to pilot new programs and services, and to evaluate their effectiveness in increasing the access. Those

already involved in outreach, training and service delivery need to share what they have learned so that others can build on their experience and provide support, as well as constructive feedback. Partnerships are also needed to identify policy issues, to shape and pass legislation, to launch needed research, and to keep the public informed through the media.

This conference laid the groundwork for developing and expanding such collaboration. Throughout the day, participants networked, planting the seeds for continuing interaction. People who identified common interested are encouraged to stay in touch by phone, fax and e-mail.

Forthcoming conferences will provide other chances to exchange information and ideas. Focus groups, task forces and other activities planned by BHAWD will provide the opportunity to collaborate in addressing specific issues. And the resources identified by participants offer additional opportunities for partnering, not only among those who attended the conference but also within local communities and across regions.

As this conference demonstrated, effective collaboration is both collectively productive and personally rewarding. People with differing backgrounds came together around a common interest to learn from and support each other. Although both disability and breast cancer were recognized as life-changing experiences, neither was regarded as a defining human characteristic. Rather, each participant was inspired by the courage, creativity and commitment of others. Together they generated ideas and energy that will enable all to move ahead.

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