office on disability and the office on women’s health us department of health & human services

PRESENTED BY ROSE, INC 202-487-0939 1

“Breaking Down Barriers to Health Care for Women with Disabilities”

Presenter:Sharman Word Dennis, M.Ed.,

CEO Rose, Inc., Washington, DC

[email protected]

Office on Disability and the Office on Women’s Health

US Department of Health & Human ServicesCo-sponsored by The Interagency Committee for

Disability Research December 6, 2004


OBJECTIVES

This Workshop objectives: To highlight the many challenges facing women with

disabilities in obtaining appropriate healthcare To provide model systems, practical examples and useful strategies and techniques to address the needs of women of color with disabilities.

To explore ways that health care professionals and facilities can overcome the barriers to providing quality care


WHO ARE WOMEN WITH DISABILITIES??

According to the NATIONAL WOMEN’S HEALTH INFORMATION CENTERAmerican women today have many roles and are busy juggling families, friends, and careers. Did you know that 28 million of these women are living with disabilities? Disabilities are physical and mental limitations that come along with different health problems. The Department of Justice defines disability as:

any physiological disorder, or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitor-urinary, hemic and lymphatic, skin, and endocrine; or

any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities."

In general, the severity of a disability is described in terms of how much it limits one's daily activities. As the number of older Americans is steadily rising, so is the number of those living with a disability. But, women are more likely than men to be limited in the amount or kind of major activity they can perform.


CHALLENGES TO ACCESSING APPROPRIATE HEALTH CARE Some of the challenges faced by women with

disabilities include: physical barriers (poor access to enter buildings,

a lack of transportation and support services to keep appointments, to receive medical care)

financial barriers (having lower wage jobs and no health insurance)

lack of reliable health information and services that address their needs that is communicated in the appropriate communication modality, i.e. Braille, sign language, appropriate grade level of written material


HEALTH ISSUES

Health Issues: Women with disabilities also face challenging barriers to health care. Women

with disabilities have described limited access to these important health care services: 1. Obstetrical care providers with knowledge about specific disabilities;2. Screening procedures with accessible mammography and pelvic exam equipment; and3. Adequate fertility control services and health information, especially regarding sexuality. (Szalda-Petree, Unpublished focus group testimony, 1995).

Prevention is also important to women with disabilities, since significantly more women with disabilities report urinary tract infections, depression, osteoporosis, restrictive lung disease, inflammatory bowel disease, heart disease, seizure disorders, and kidney disease than able bodied women (Nosek et al., 1997). Most of these secondary conditions are at least partially preventable.


HEALTH & SAFETY ISSUES

Early pregnancy among adolescent females with serious emotional disturbances

Females with Autism and other Developmental Disabilities and Sexual Issues

Abuse of females with developmental disabilities


WOMEN OF COLOR

We continue to live in a society that is less accepting of people of color

Adequate health care for people of color continues to be an issue regardless of SES

Studies have shown that women of color receive a lower standard of healthcare than their white sisters


WOMEN OF COLOR WITH DISABILITIES

Women of color with disabilities are victims of the impact of a "triple jeopardy" syndrome: race, gender, and disability.

Besides having to cope with the usual problems of a disability, minority women also have to deal with economic, social, and cultural factors that can hurt their health.

Disparities in educational resources, lower wage jobs, and higher unemployment rates found in some minority groups are barriers to high-quality, affordable, and accessible health care [4woman.gov]


HEALTH ISSUES FACING WOMEN OF COLOR

Minority Access to Health Care in the US Studies reporting on disparities in access to health care among women of different

racial and ethnic origins in the US have been summarized in reports by the Agency for Health Care Quality and Research.

Receipt of certain major procedures by hospitalized adults varies by race and sex. Harris, Andrews, and Elixhauser, Ethnicity and Disease 7, pp. 91-105, 1997.An analysis of 1.7 million hospitalizations, reveals that black women had a significantly lower rate of therapeutic procedures than white women for nearly all female reproductive system diseases. And, in general, blacks had a significantly lower rate of therapeutic procedures than whites for several common cancers such as colon, bladder, cervical, and breast cancer.

Health insurance coverage: disparities related to race, ethnicity, and sex. Health Insurance Status of Workers and Their Families: 1996 . AHCPR Publication No. 97-0065.In 1996 employed black women were more likely than employed black males to obtain public insurance (9.5 vs. 2.7%), and Hispanic women were much more likely than Hispanic men to obtain work-related coverage (62.4 vs. 49.7%). Although minority women workers were less likely to be uninsured than minority male workers, they still were much more likely to be uninsured than employed white women.

Among working women, 29.9 % of Hispanics, 22.2% of blacks, and 12.6% of whites were uninsured.



Screening and health promotion: Hispanics are less likely than whites to be screened for cancer. Perez-Stable, Otero-Sabogal, Sabogal, et al., Archives of Internal Medicine 154, pp. 1073-1081, 1994. Researchers interviewed 844 Hispanic and 510 non-Hispanic whites who were 35 to 74 years of age and members of the Kaiser prepaid health plan. They found that 90% of white and Hispanic women had a Pap smear within the past 3 years. However, a substantially greater proportion of Hispanic women had never had a Pap smear and were somewhat less likely than white women ever to have had a screening mammogram (85 vs. 95%). Hispanic women were less likely than white women to estimate that their chances were excellent or good of being cured if cervical cancer (46 vs. 64%, respectively) or breast cancer (48 vs. 60%) were detected early.

Personal health maintenance: behavioral risk factors of Hispanic women are unfavorable compared with non-Hispanic white women. Perez-Stable, Marin, and Marin, American Journal of Public Health 84(6), pp. 971-976, 1994. Researchers conducted a community survey of behavioral risk factors for poor health among 652 Hispanics and 584 non-Hispanic whites living in San Francisco. Forty-six percent of Hispanic women had engaged in no leisure-time physical activity in the past week compared with 23% of non-Hispanic white women. Hispanic women were less likely than non-Hispanic white women to have ever had a Pap smear (76 vs. 93%) or clinical breast examination (81 vs. 96%).



Heart Disease Cancer Accidents Diabetes Stroke Chronic liver disease and cirrhosis Chronic lower respiratory diseases Influenza and pneumonia Kidney disease Perinatal conditions Septicemia



Minority women are also less likely to have access to reproductive health care, including medically appropriate contraceptives, annual gynecological exams, and prenatal care.


HEALTH ISSUES RELATED TO WOMEN WITH DISABILITIES

Access Being invisible

Gender Inequity Service Barriers

Lack of accommodations Invalidation of Sexuality and Reproductive Health Abuse Privacy Medical negligence Mental Health

Stress Depression and suicide


ISSUES FOR WOMEN OF COLOR WITH DISABILITIES

Cancer Cancer in a woman with a low IQ Cancer in a woman of color with a low IQ, poor

and speaks with an accent

Prenatal care Prenatal care in a woman who has mental

health issues Prenatal care in a woman who has mental

health issues who is black & homeless



Women of color with disabilities use fewer health services and continue to suffer more from premature death, disease, and secondary disabilities [4woman.gov]

For white women with disabilities there also are invisible barriers to care, such as policies that deny service to women who cannot easily get up onto exam tables, or that let doctors refuse to see women with disabilities.



For women of color with disabilities, especially dark skin color or those who speak with an accent, the barriers are VERY visible

Ignored Talked at instead of talked to or with No communication to discover your needs or issues Lack of validation Total disrespect Lack of confidentiality Lack of accessibility to services due to a variety of issues Lack of referral for needed services Lack of follow up by health care providers Lack of insurance and therefore not able to receive adequate services


RECOMMENDATIONS

Identify health care providers who are accepting of all people: people of color and those with disabilities

Train medical studentsEnforce legislation but work to change

attitudes


RECOMMENDATIONS

Create a paradigm shift within society

For total acceptance and inclusion of people with disabilities and people of color

office on disability and the office on women’s health us department of health & human services

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