How Does Access to Health Care Affect Women with Disabilities in the USA - Essay Example

Running head: ACCESS TO HEALTH CARE A Literature Review on How Access to Health Care Affects Women With Disabilities in the U.S. University Name Abstract A literature review of five studies reveals an alarming lack of healthcare access in the United States for women with disabilities. The study coordinators explored demographics, financial barriers to access, physical barriers to access, and special programs that accommodate these female patients. Limitations and policy recommendations were issued as well. The future for women with disabilities seems hopeful. A Literature Review of How Access to Health Care Affects Women With Disabilities in the U.S. Introduction As baby boomer women age, they find that they need access to the health care system more then ever. Health care practitioners and researchers are coming around to closing the disparity between services offered to men and to women. For example, the editor of the New England Journal of Medicine no longer accepts studies unless male and female populations were studied separately. Previously, women were offered treatment options derived from research done on male physiology. However, the health care system falls short in its distribution of health care to women with disabilities and chronic conditions. It is worth our while to explore the findings of fie studies on this issue: how access to health care affects women with disabilities in the United States. Four areas tend to be studied most: demographics, financial barriers to access, non-financial barriers to access, and special programs for women with disabilities. Methods for Each of the Studies Blanchard, J., & Hosek, S. (2003). Financing Health Care for Women with Disabilities Blanchard and Hosek conducted focus groups, interviews with women with disabilities physicians, insurers, policymakers, and managed plan executives from the Pittsburgh area. They also conducted an extensive literature review for this white paper. Grabois, E., & Young, M. E. (2001). Managed Care Experiences of Persons with Disabilities. The Journal of Rehabilitation, 67(3), 13 Grabois and Young interviewed twelve women with disabilities in their mid-forties. These women were of various ethnic and educational backgrounds. Some belonged to HMOs and PPOs and were individually diagnosed with post-polio syndrome, spinal cord injury, multiple sclerosis, lupus, bipolar disease, scleroderma, amyotrophic lateral sclerosis, asthma, and fibromyalgia. These women filled out a questionnaire with open-ended questions. Special program directors were also interviewed in the Houston area. O'Day, B., & Goldstein, M. (2005). Advocacy Issues and Strategies for the 21st Century: Key Informant Interviews. Journal of Disability Policy Studies, 15(4), 240+. O'Day and Goldstein interviewed sixteen disability research leaders from various agencies to seek the top five advocacy priorities. Salgado, D. M., Vogt, D. S., King, L. A., & King, D. W. (2002). Gender Awareness Inventory-VA: A Measure of Ideology, Sensitivity, and Knowledge Related to Women Veterans' Health Care. 247+ Salgado, Vogt, King, and King studied 619 health care workers in two VA hospitals to gauge the level of care they were giving to female veterans. Scheer, J., Kroll, T., Neri, M. T., & Beatty, P. (2003). Access Barriers for Persons with Disabilities: The Consumer's Perspective. Journal of Disability Policy Studies, 13(4), 221+. Scheer, Kroll, Neri, and Beatty conducted a three-year longitudinal study of persons with disabilities. Access to five different health care services was studied: primary care physicians; specialists; durable medical equipment - obtain or repair; mental health; and rehabilitation services. Source of Information I found the various journals from the www.questia.com database using the Boolean "Women and healthcare and access and disabilities." Main Findings The most common findings addressed demographics, financial barriers to access, physical barriers to access, and special programs for women with disabilities. Generally, heath care access to women with disabilities is deficient across the U.S. Care for women with disabilities tends to be heavily weighted toward treating specific problems related to the disabilities those women have, often at the expense of ignoring the broader scope of their health needs as women. Those needs include prevention (especially as it relates to female specific cancer screening and general medical screening), sexual and reproductive health, vulnerability to behavioral health problems and abuse, and unique daily living needs. (Blanchard & Hosek, 2003, p. 33) Many advocacy issues also included lack of transportation, lack of acquisition of technology, poor education, unemployment, and lack of community-based long-term care. Many of these women lived on fixed public assistance. (O'Day & Goldstein, 2005) Demographics Blanchard and Hosek found that the underserved were women who lived in poverty who belonged to traditionally underserved minorities. These ethnic groups included native-American and African-American women. These women often had inadequate public transportation to local health care facilities. Grabois and Young found women of Hispanic origin as well in their group. O'Day and Goldstein studied leaders of special programs from the Houston area. Participants were of various ethnic backgrounds. Salgado, Vogt, King, and King studied health care workers in two Northeastern VA facilities, also of various ethnic backgrounds. Scheer, Kroll, Neri, and Beatty did not indicate the ethnic nor economic backgrounds of their study participants. In addition to demographics, these five studies also addressed financial barriers to access to adequate health care services. An estimated 27 million American women are living with disabilities, and this number is steadily increasing. Although definitions of disability vary considerably (see Appendix A), in general, women with disabilities fall into three overlapping categories: (1) women with physical and sensory disabilities, such as cerebral palsy, multiple sclerosis, and vision and/or hearing impairments; (2) women with mental illness and/or cognitive disabilities, such as mental retardation; and (3) women with disabilities secondary to chronic medical conditions, such as diabetes. The term disability is used to describe "any impairment, activity limitation, or participation restriction that substantially affects one or more life activities" (World Health Organization, 2001). According to data from the 2000 Census, more than 17 percent of U.S. women between the ages of 16 and 64 currently report some type of disability. (Blanchard & Hosek, 2003, p. 3) Financial Barriers Blanchard and Hosek found that primary care for women with disabilities is more costly then primary care for women without disabilities. This is due to extended office time and additional personnel to assist these disabled patients. Another cost is the fee-for-service option poor women often choose in a health plan. Physicians who were interviewed often did not recoup these added costs and often gave free medical advice over the phone when transportation was not possible. Physicians often see these women with disabilities but cannot sustain a practice without reimbursement, so they rarely specialize in this patient population. Doing so would require specialized equipment and facilities. One patient in the Grabois and Young study expressed her frustration: She had no earthly idea about scleroderma. She did not know how scleroderma affected the other aspects of my health and admitted to me that I knew more about this disease and how it affected patients in general than what she knew. She tried to do a good job and she tried to provide me with the care that she could under the limitations of the plan. (Grabois & Young, 2001, p. 13) The women on public assistance encounter a major disincentive to work. Because of their disability, they cannot work full-time, and they would require supplemental assistance. Because they have a job, they can no longer qualify for public assistance, so it is better to stay unemployed. In addition, these women lose on corporate health plans because of their part-time status. By staying on public assistance, they are eligible for Medicare and Medicaid. High-cost specialty services are not typically offered to these women because there will be no reimbursement for them. (O'Day & Goldstein, 2005) One patient made this observation: Employment has been a continual concern and has not dramatically improved since passage of the ADA ... about 70 percent of people with disabilities between 15 and 64 years of age are neither employed nor actively looking for work ... and this has not changed since 1970. As far as having civil rights and having money, it would have taken my breath away if anyone had told me 30 years ago that we would have what we have now. What has not happened, and this bothers the hell out of me, is the unemployment ... In spite of everything I did, everything the rest of us did, we couldn't get people to take the leap of faith and go off to work and start to pursue the American dream. Here we are in 2002, and we still have lots of people with disabilities not pursuing the American dream, and that is very distressing. (O'Day & Goldstein, 2005) In one study, half the participants earned below $20,000 per year. Often, they could not afford the co-pay and went with out treatment. Others would delay treatment until they could save up for it. (Sheer, Kroll, Neri, & Beatty, 2003). Physical Barriers Many disabled women reported no access to assistive technology. Such technology allows them to have a job and participate in their community. Another barrier is lack of information especially Internet access. One participant emphasized the significance of broadband communication and its utility in transmitting digital information in Braille or even sign language over the Internet. Long-Term Care. Four of the 16 people mentioned long-term care as an advocacy issue that must be addressed. They were especially concerned about Medicaid's "institutional bias," which financially favors institutional placement over community-based care by automatically paying for nursing homes or institutional care and requiring states to obtain waivers to fund community placements. Several participants mentioned the implementation of the decision in L.C. v. Olmstead (1999) (O'Day & Goldstein, 2005) One of the most cited physical barriers to health care access is lack of transportation. Oftentimes, these women could not rely on rides from family or friends who had job-related obligations. Another physical barrier is the way physician's offices are set up. The diagnostic equipment such as exam tables, x-ray, scales, etc. is inaccessible. Parking ramps are another obstacle. A woman with MS in her mid-40s who worked as a state delegate used a PCP and gynecologist whose office parking lot was graded on two levels, with a steep ramp in between levels. Because of this, she had to traverse the hill in a zigzag pattern, which was exhausting for her arms, and frustrating, "It was so upsetting, the thought of even having to go was distressing. I thought to myself, Screw it! If I'm not going to die, if nothing horrible is happening to me, never mind!' I didn't follow through with a course of treatment that my gynecologist prescribed because it meant going to the office once a month for six months, and there was no way." She also spoke of waiting "until an upper respiratory infection turned into pneumonia before I would go" to her PCP's inaccessible office. As an activist, she knew their facilities were "totally out of compliance with state codes as well as federal codes for access.... I went to my health carrier and filed a complaint of disabled access program violation under the federal statute. I also filed a complaint with the state." The case was still pending at the time of the interview. (Scheer, Kroll, Neri & Beatty, 2003) Another barrier to health care access is finding physicians knowledgeable in the patient's disability. Specialized Programs The news is not all bad. The studies also isolated programs designed to help these women with disabilities. The Boston Community Medical Group/Community Medical Alliance managed care program provides comprehensive services, including case management, for people in Boston with severe disabilities. It is financed by the Massachusetts Medicaid Program and has been in existence in an earlier form since 1970. As of March 2002, 265 patients with severe disabilities, about a third of whom are women, were enrolled in the program. Minnesota Disability Health Options (MnDHO) is a publicly financed managed care program that provides coordinated care for people with disabilities who are covered by Medicaid (and Medicaid/ Medicare dual eligibles). It is owned and operated by the Minnesota Department of Health, UCare Minnesota, and AXIS Healthcare. It has been in existence only since September 2001. The Independent Care (ICare) program is a publicly funded managed care program providing coordinated care for people with disabilities who are covered by Medicaid. It is run through a Milwaukee partnership of public and private organizations. The state funds the effort; the Milwaukee Center for Independence and Care Network, Inc., provide social services and coordinated care efforts; and Humana, Inc., is responsible for administration, such as claims processing. A pilot program initiated in 1994 enabled the voluntary enrollment of a select group of disabled individuals with Supplemental Security Income (SSI). Enrollment remains voluntary and is open to any person who contacts ICare. The Breast Health Access for Women with Disabilities program of the Alta Bates Summit Rehabilitation Center provides breast cancer screening, education, and outreach for women with physical and visual limitations in Alameda and Contra Costa Counties, California. The breast health program is staffed by a specially trained nurse who administers the breast exam. Funding is through private foundations; no reimbursement services have yet been initiated. Women receive a free clinical breast exam and education and can be referred to a wheelchair-accessible site for a mammogram, if needed. The program will bill Medicaid, Medicare, and/or private insurance companies as appropriate. Some reimbursement for transportation and attendant care services is also provided. The Health Resource Center for Women with Disabilities at the Rehabilitation Institute of Chicago provides education, community outreach, and comprehensive health care for women with disabilities. The target population consists of women with physical disabilities. The program is staffed approximately one-half day per week by three gynecologists who provide pap smears and oral contraceptive counseling and by one double-boarded internist/rehabilitative medicine specialist. Gynecologists work on a rotating basis. Opened in December 2001 and based at Magee-Women's Hospital, the Comprehensive Healthcare Center for Women with Physical Disabilities provides comprehensive primary and gynecologic care for women with disabilities. As of February 2003, approximately 164 women have been evaluated. The target population consists of women with physical disabilities-most commonly multiple sclerosis, cerebral palsy, spinal cord injury, spina bifida, and muscular dystrophy. The center is staffed by a primary care physician, certified nurse midwife, registered nurse, social worker, and medical assistant. It provides one-half day of care per week, with an average of four one-hour sessions per clinic day. Funding is provided by the FISA Foundation, Eden Hall Foundation, and patient billing, with the majority of patients to date covered by Medicare. The Home-Based Health Maintenance Program for Women with Multiple Sclerosis provides in-home gynecologic exams, breast exams, and Pap smear screening as well as education for women with multiple sclerosis. As of February 2003, 117 home visits were conducted through the program. The target population consists of women with multiple sclerosis. The program is staffed by a program director, a specially trained nurse midwife, and a support person. ACCESS at Anixter Center is a comprehensive primary health care facility that provides coordinated outpatient services for people in Chicago with disabilities. ACCESS also advocates for the broader disability community. The health care services are based at the Anixter Program information is from Leary (2002) and Mageras (2003). ACCESS is staffed by two internists, two psychiatrists, two psychologists, a licensed practical nurse, a case manager, a podiatrist, a medical assistant, and a receptionist. Started in July 2002, the Women's Outpatient Wellness Center program of the SSM Rehabilitation Center in St. Louis operates on patient demand. The center initially operated one day per week, but there are plans to expand operations to two days per week or more if needed. Each patient is estimated to require about one hour of time with the health care provider. A second site was scheduled to be opened in 2003. The target population consists of women with physical disabilities. The center is staffed by a gynecologist and women's health nurse practitioner. (Blanchard & Hosek, 2003, p. 49) Framework All these studies share one goal in common - to improve health care access to women with disabilities. Conclusion The literature reviewed has addressed demographics, financial barriers to health care access, physical barriers, and several programs designed to aid women with disabilities. However, there are limitations to the studies. For example: Limitations of the Study and Recommendations for Future Research. Although the study does not purport to be generalizable to the disability population as a whole, it does capture in-depth the experiences with managed care of persons with a variety of physical disabilities. (Grabois & Young, 2001, p. 13) Based on their findings, Blanchard and Hosek recommend many policy changes. Payers should create incentives for providers to accommodate women with disabilities. States should cooperate with Medicaid to coordinate better coverage. Medicaid should revamp their methods for risk adjusting their fee-for-service and capitation payment rates. Finally, encourage greater physician support by way of specialized training to care for female patients with disabilities. (Blanchard & Hosek, 2003, p. 34) The future for women with disabilities is one of guarded optimism as providers and insurers become aware of the problem. References Blanchard, J., & Hosek, S. (2003). Financing Health Care for Women with Disabilities. Santa Monica, CA: Rand. Retrieved December 19, 2005, from Questia database: http://www.questia.com/PM.qsta=o&d=102676105 Grabois, E., & Young, M. E. (2001). Managed Care Experiences of Persons with Disabilities. The Journal of Rehabilitation, 67(3), 13. Retrieved December 19, 2005, from Questia database: http://www.questia.com/PM.qsta=o&d=5002422089 O'Day, B., & Goldstein, M. (2005). Advocacy Issues and Strategies for the 21st Century: Key Informant Interviews. Journal of Disability Policy Studies, 15(4), 240+. Retrieved December 19, 2005, from Questia database: http://www.questia.com/PM.qsta=o&d=5009049335 Salgado, D. M., Vogt, D. S., King, L. A., & King, D. W. (2002). Gender Awareness Inventory-VA: A Measure of Ideology, Sensitivity, and Knowledge Related to Women Veterans' Health Care. 247+. Retrieved December 19, 2005, from Questia database: http://www.questia.com/PM.qsta=o&d=5000848675 Scheer, J., Kroll, T., Neri, M. T., & Beatty, P. (2003). Access Barriers for Persons with Disabilities: The Consumer's Perspective. Journal of Disability Policy Studies, 13(4), 221+. Retrieved December 19, 2005, from Questia database: http://www.questia.com/PM.qsta=o&d=5001705978 Read More