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A Provider's Guide for the Care of Women
with Physical Disabilities and Chronic
Suzanne C. Smeltzer, RN, EdD, FAAN Professor & Director, Nursing Research Director, Health Promotion for Women with Disabilities Project Villanova University College of Nursing 800 Lancaster Avenue Villanova, PA 19085 Phone: 610-519-6828 Fax: 610-519-7650 Nancy C. Sharts-Hopko, RN, PhD, FAAN Professor & Director, Doctoral Program Villanova University College of Nursing 800 Lancaster Avenue Villanova, PA 19085 Phone: 610-519-4906 Fax: 610-519-7650 Developed by the North Carolina Oﬃ ce on Disability and Health, a partnership between the North Carolina Division of Public Health of the Department of Health and Human Services and the FPG Child Development Institute at the University of North Carolina at Chapel Hill in collaboration with Villanova University College of Nursing.
The information provided in this material was supported by Grant/ Cooperative Agreement Number U59/CCU419404 from the Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities. The contents are solely the responsibility of the authors and do not necessarily represent the oﬃ cial views of CDC.
This revision of A Provider's Guide for the Care of Women with Physical Disabilities and Chronic Health Conditions is dedicated to Sandra L. Welner M.D. for her tireless eﬀ orts to improve the health care of women with disabilities. Dr. Welner's genteel advocacy explored and explained unique problems facing women with disabilities from contraception, infections, bleeding and/or estrogen replacement to those seeking enjoyable sexuality, those suﬀ ering sexually transmi� ed diseases, or cervical / breast malignancy. She was a master of idealistic problem solving, with an incredible eye for detail. Welner contributed to women's health on a much broader scale through her commi� ee work with various agencies, from the US Department of Health and Human Services and the Centers for Disease Control, to states' health departments and health care institutions such as the American College of Obstetrics and Gynecology. These organizations' policies for caring for those with disabilities were shaped directly by Dr. Welner. She lectured all over the world at university grand rounds and conferences, and invited special sessions at venues as notable as the United Nations. Recognizing that women with disabilities may skip important medical follow-up because mobility problems can make doctors' appointments an ordeal, Dr. Welner designed the ﬁ rst universally accessible examination table for women with disabilities. The Welner Table is found in facilities around the world. It reﬂ ects the necessary sensitivity to accessible care at the level of the examination room beyond mere ramps and wide elevators. Her legacy endures in the medical centers she inspired and in the patients she cared for. (Welner Enabled; h� p: This guide is also dedicated to women with disabilities who have taught us in numerous ways the importance of recognition, sensitivity, and dignity in all their health care encounters.
The authors of this guide would like to acknowledge the reviewers who provided excellent comments and feedback to us. Their feedback enabled us to make the content contained in the Provider's Guide relevant to clinicians and to the health care needs of women with Alicia Conill, MD CEO and Medical Director Conill Institute for Chronic Illness Clinical Associate Profess of Medicine University of Pennsylvania Women's Health Coordinator NC Oﬃ ce on Disability and Health University of North Carolina at Chapel Hill Cathy Klu� z-Hile, BSN, CDDN, MA Specialized Services Unit Manager Division of Public Health NC Department of Health and Human Services Medical Director Inglis House/Inglis Innovative Services Clinical Assistant Professor of Medicine Drexel School of Medicine Karen Luken, MS, CTRS NC Oﬃ ce on Disability and Health University of North Carolina at Chapel Hill Lori L. Rowle� , PhD Associate Professor of Religious Studies University of Wisconsin at Eau Claire 2 Barriers to Access 3 Health Promotion and Wellness Screening Tests and Immunizations Guidelines 6 Pelvic Examination 8 Cancer Screening10 Sexuality11 Menstrual Self Care12 Contraception14 Pregnancy Preconception Care Labor and Delivery Unique Considerations 18 Infertility19 Infection Urinary Tract Infections Sexually Transmi� ed Diseases 22 Menopause24 Bladder and Bowel Dysfunction25 Osteoporosis26 Violence and Abuse29 Psychological / Mental Health Issues30 Aging with a Disability31 Conclusion32 References39 Appendices B: Interacting with Persons with Disabilities C: Ten Behaviors to Good Health D: CDC Adult Immunization Guidelines Over 30 million women, or more than 20% of women, in the United States have a disability. These disabilities range from relatively mild limitations requiring li� le or no need for assistive aides or devices to signiﬁ cant disabilities necessitating substantial care and advanced technology to enable mobility, self-care and breathing. Disabilities may be physical, sensory, developmental, intellectual, or psychiatric in nature or a combination of these. While there are many deﬁ nitions of disability, there is general agreement that disability is a limitation in a major activity, caused by a chronic health condition (Jans & Stoddard, 1999). Despite even signiﬁ cant disabilities, most women who have a disability are expected to have a normal or near-normal life span (Vandenakker & Glass, 2001). Thus, health care, including preventive health screening, is essential to enable them to live with the highest quality of life within the limitations related to their disability or chronic health condition. Women with disabilities have the same needs for health care and preventive health screening as all women. This guide is designed for clinicians to improve their knowledge and practice in providing care to women with physical disabilities and chronic health conditions. The guide reviews strategies for management as well as specialized approaches. While the ﬁ rst sections focus on access to general medical care and removing common barriers, other sections cover the pelvic exam, cancer screening, contraception, pregnancy, menopause, aging, health promotion, as well as other critical components of comprehensive reproductive health care. Viewing the woman with a disability as a woman ﬁ rst, who happens to have physical diﬀ erences, will give us a be� er understanding of how her disability aﬀ ects her health and how her health aﬀ ects her disability. Recognizing that she is the person most knowledgeable about her own disability will foster eﬀ ective provider-patient relationships and more active participation in self-care and health promotion. PROVIDER'S GUIDE 1 Barriers to Access Although the American with Disabilities Act (ADA) of 1990 was enacted more than 15 years ago to assure equal access to persons with disabilities, women with disabilities con- tinue to encounter and report multiple barriers to health care services and providers (Nosek, 2004). These barriers can be environmental (absence of ramps, inaccessible health care facili- ties), informational (lack of alternate formats, high reading level), communication (lack of TTY, video relay services, sign language interpreters), or a�itudinal (negative perceptions and stereotyping of persons with disabilities). Other barriers to health care and preventive screening encountered by women with disabilities include transportation diﬃculties, inabil- ity to pay because of limited income, diﬃculty ﬁnding a health care provider knowledgeable about care for people with their particular disability, previous negative experiences, reliance on caretakers, and the demands of coping with the disability itself (Nosek et al., 1997). Lack of emotional support from signiﬁcant others and lack of a�ention to general health among women living in institutions (Be�er Health Channel, 2004) are also signiﬁcant concerns. Women with disabilities do not diﬀer from other women in their need for pelvic examinations and other health screenings. The National Study of Women with Physical Dis- abilities (Nosek et al., 1997) revealed that women with disabilities are signiﬁcantly less likely to receive pelvic exams at least every two years than women who do not have disabilities. In addition, the more severe their physical disabilities, the less likely women were to have regular pelvic exams. Minority women with disabilities were also less likely to have regular pelvic exams. The most frequent reasons women gave for not having regular pelvic exams included diﬃculty ge�ing onto the exam table, being too busy, and inability to ﬁnd a physi- cian who suited them. Additional reasons included the belief that they did not need pelvic exams because of their disability, inability to ﬁnd a health care provider knowledgeable about their disability, diﬃculty in accessing the oﬃce or clinic, and ﬁnding transportation. These ﬁndings have been corroborated in other studies (Coyle et al., 2002; Ode�e et al., 2003; Schopp et al., 2002; Veltman et al., 2001). Iezzoni and associates (2001) have observed that while women with disabilities, in general, receive screening and preventive services at rates comparable to all women, those with mobility limitations had much lower rates of having gynecological exams. Data from the Centers for Disease Control and Prevention (CDC) have also indicated that women 65 years of age and older with functional limitations are signiﬁ- cantly less likely to have Pap tests and mammograms than younger women (Thierry, 2000). Because of the persistence of barriers to accessing services, it is essential that health care providers take steps to ensure that their oﬃces and other health care facilities used by those with disabilities are accessible. Ensuring access includes removal of structural barri- ers by the addition of ramps, designation of accessible parking spaces, and modiﬁcation of restrooms to make them usable by women with disabilities. Alternate communication meth- ods (e.g., sign language interpreters, TTY text telephones, assistive listening devices) and alternate formats of patient education (e.g., audiotapes, large print, Braille) are essential to provide appropriate health-related information to women with disabilities. These reasonable accommodations fall within the guidelines of the Americans with Disabilities Act (ADA), which requires their provision without cost to the patient.
In addition, health care providers may underestimate the eﬀect of a woman's physical disability on her ability to access health care, including health screening and health promo- tion. Further, health care providers may focus on the woman's disability while ignoring her general health issues and concerns (Nosek et al., 1997).
2 PROVIDER'S GUIDE Health Promotion and Wellness General health screening recommendations for all women apply to women with disabilities. Although physical limitations resulting from a disability and barriers in health care facilities may make it diﬃcult for some women to obtain health care and preventive health screenings, the presence of a disability should not be used as a rea- son to defer or neglect recommended screening. Rather, the presence of a disability may increase the need for screening and follow up. Various federal and state agen- cies have established general health promotion guidelines, and these guidelines may vary slightly. One federal agency, the National Women's Health Information Center (2004), has developed recommendations for health screening for all women (Table 1); these include speciﬁc issues that pertain to all women, including women with disabil- ities. However, based on a woman's health and her disability, some screenings may be recommended sooner, more o�en, or not at all. Each woman should be considered Discuss with health Discuss with health health care pro- care provider cluding weight and provider heightThyroid test Start at age 35, then every 5 years Start at age 21, Blood pressure test then once every 1- 2 years if normal.
Start at age 45, Discuss with health Get a bone density test health care pro- care provider.
at least once. Talk to provider about repeat Start at age 45, One to two times One to two One to two times One to two times ev- times every year every year Every 1-3 years if Every 1-3 years Health: Pap test woman is sexually active or is older If sexually active, If woman is at If woman is at high If woman is at high yearly until age 25 high risk for risk for chlamydia risk for chlamydia or or other STDs, may other STDs, may need other STDs may need this test.
need this test.
PROVIDER'S GUIDE 3 Table 1 continued Sexually Transmit- Talk to health care Talk to health care Talk to health care Talk to health care ted Disease (STD) provider if woman provider if wom- provider if woman provider if woman an or partner has or partner has had or partner has had had sexual contact sexual contact with sexual contact with tact with another with another per- another person or another person or per- person or persons son or persons or persons or if either sons or if either has or if either has had if either has had a has had a STD.
Every 1-2 years. Every 1-2 years. Dis- Every 1-2 years. Dis- cuss with health care cuss with health care Colorectal Health: Fecal occult blood testFlexible sigmoid- oscopy (with fecal occult blood test) is preferred Double contrast Every 5-10 years (if Every 5-10 years (if not having colonos- not having colonosco- copy or sigmoidos- py or sigmoidoscopy) Every 10 years or Every 10 years or sooner if abnormali- sooner if abnormali- ties warrant more ties warrant more frequent monitoring. frequent monitoring.
Every 5-10 years Every 5-10 years along along with screen- with screening (sig- moidoscopy, colonos- copy, colonoscopy, or copy, or DCBE) exam with eye care and 39 providerHearing test Discuss with health Discuss with health 18, then every 10 care provider.
Skin Health: Mole Monthly mole self- Monthly mole Monthly mole self- Monthly mole self- exam; by a health self-exam; by a exam; by a health exam; by a health care care provider ev- care provider every provider every year.
ery 3 years, start- vider every year.
ing at age 20.
4 PROVIDER'S GUIDE Health Promotion and Wellness (cont.) Sexually Transmit- Talk to health care Talk to health care Talk to health care Talk to health care Recommendations for immunizations for women with disabilities are typically ted Disease (STD) provider if woman provider if wom- provider if woman provider if woman the same as those for all women. CDC/ACIP recommendations are provided in Table an or partner has or partner has had or partner has had 2 (See Appendix D). Despite these recommendations, questions have been raised about had sexual contact sexual contact with sexual contact with the safety of immunization in immune-mediated conditions. The available evidence tact with another with another per- another person or another person or per- person or persons son or persons or persons or if either sons or if either has suggests that immunizations do not cause immune-mediated disorders, such as MS, or if either has had if either has had a has had a STD.
or exacerbations or relapses. Further, immunizations, such as inﬂuenza vaccine, may decrease the likelihood of serious consequences of inﬂuenza. People with chronic health Every 1-2 years. Every 1-2 years. Dis- Every 1-2 years. Dis- problems and disabilities and the elderly are more likely to experience complications cuss with health care cuss with health care associated with inﬂuenza than others. Therefore, the CDC (2004) has recommended that all people who are 50 years of age or older, all persons with medical problems, persons with immunosuppression (including medication-induced) and all persons with any Colorectal Health: condition that compromises respiratory function or the handling of secretions be immu- Fecal occult blood nized against inﬂuenza. Evidence-based recommendations developed for persons with MS (Multiple Scle- Flexible sigmoid- rosis Council for Clinical Practice Guidelines, 2001) can serve as a guide for those with oscopy (with fecal other chronic illnesses and disabling conditions. While these recommendations advise occult blood test) is that immunizations be administered when patients are not experiencing a relapse of MS, the rationale is that vaccination may result in fever, which could worsen the symp- Every 5-10 years (if Every 5-10 years (if toms of relapse. Further, if relapse is treated with corticosteroids, their administration not having colonos- not having colonosco- might decrease the vaccine's eﬀectiveness. To avoid these problems, it is recommended copy or sigmoidos- py or sigmoidoscopy) that immunizations be postponed and not administered during febrile episodes associ- ated with infections or for 4 weeks a�er completion of a regimen of corticosteroids. Every 10 years or Every 10 years or For individuals with disabilities who are living in congregate housing (e.g., sooner if abnormali- sooner if abnormali- nursing homes, group homes), inﬂuenza, hepatitis B and pneumococcal vaccines are ties warrant more ties warrant more recommended. Although data are limited, there is no conclusive evidence that these im- frequent monitoring. frequent monitoring.
munizations are unsafe for persons with immune-mediated disorders, such as MS. One Every 5-10 years Every 5-10 years along recent case-control study has suggested that immunization with recombinant hepatitis along with screen- with screening (sig- B vaccine is associated with an increased risk of MS (Hernán, Jick, Olek & Jick, 2004). moidoscopy, colonos- However 93% of persons with MS in this study had not received hepatitis B vaccine, copy, colonoscopy, or copy, or DCBE) and other studies have not supported this ﬁnding. The researchers were not able to establish a causal relationship. exam with eye care and 39 providerHearing test Discuss with health Discuss with health 18, then every 10 care provider.
Skin Health: Mole Monthly mole self- Monthly mole Monthly mole self- Monthly mole self- exam; by a health self-exam; by a exam; by a health exam; by a health care care provider ev- care provider every provider every year.
ery 3 years, start- vider every year.
ing at age 20.
PROVIDER'S GUIDE 5 Pelvic Examination The United States Preventive Services Task Force recommends that all women ages 18 to 65 years should have a gynecological exam every one to three years (AHRQ, 2003). If currently sexually active, they should be screened before age 18 and beyond An appropriate examination table is essential to the safe care of women with disabilities. Ideally, the table can be raised and lowered. Additional personnel may be needed to assist the woman to transfer onto the table and to stabilize her lower extremi- ties during the examination. Assistance by clinic or oﬃce personnel is a reasonable accommodation under the Americans with Disabilities Act (ADA). Assistance by clinic staﬀ or oﬃce personnel is a recommended way to make the exam accessible to all wom- en. Expecting women to bring their own assistants to scheduled visits is not in compli- ance with the Americans with Disabilities Act. It is important to ask the woman with a disability what would make the exam easier and more comfortable for her. Ask her if she needs help and if so, how others can assist her. With some disabilities (e.g., stroke, spina biﬁda, multiple sclerosis, cerebral palsy, some orthopedic injuries), spasticity may result in pain and limit range of mo- tion of the legs. Rapid positioning can increase spasticity and pain. Spasticity can be managed by gentle stretching of the legs during positioning, as well as application of 2% lidocaine to the perineum to eliminate discomfort that can exacerbate the spasticity. Adverse responses to lidocaine could include allergic or sensitivity responses and skin rashes. (MedlinePlus 2001). Using padded, so�, adjustable boot-type stirrups can make positioning more comfortable and easier. Other women may need to be examined on a regular examining table or bed, positioning their legs in the diamond-shaped position. Another alternative position for women for whom abduction is diﬃcult or impossible is side-lying. One nurse practitioner has described performing pelvic examinations on women in the seated position, by crouching beneath them. 6 PROVIDER'S GUIDE Pelvic Examination (cont.) Autonomic dysreﬂexia is a potential complication of pelvic examination among women with a spinal cord injury above the T-6 level. It is the reaction of the autonomic nervous system to manipulation of visceral organs such as the cervix, uterus, bladder and rectum. Autonomic dysreﬂexia has a rapid onset and can result in seizures, intra- cranial hemorrhage, coma and death; therefore a physiatrist or anesthesiologist should be present during the examination. Ask the woman if she has a history of autonomic dysreﬂexia associated with urinary tract infection, a full bladder, menstrual abnormali- ties, sexually transmi�ed diseases, decubiti, appendicitis, ovarian cysts, ectopic preg- nancy or constipation. Signs and symptoms of autonomic dysreﬂexia include headache, sweating and piloerection above the level of the lesion, nasal stuﬃness, facial ﬂushing, papillary dilatation, rapid heart rate, arrhythmias, and labile hypertension among other Another population with a known need for special consideration is women with spina biﬁda (SB). Up to 73% of individuals with SB are sensitive to latex. Consider all patients with SB to be at high risk for an allergic reaction to latex. The reaction can range from watery or itchy eyes, sneezing and coughing to hives, laryngeal edema, and anaphylactic shock. Patients with SB should avoid exposure to latex gloves, catheters, condoms, balloons, or any product that contains, or is contaminated with, latex. Oﬃce management staﬀ should be alerted to this when making appointments, and provid- ers should make provisions for a latex-free environment when examining women with spina biﬁda.
PROVIDER'S GUIDE 7 Breast and cervical cancer. Breast cancer is one of the obesity-linked cancers.
Because women with mobility limitations have diﬃculty maintaining normal weight, this can place them at increased risk. Shootman and Jeﬀe (2003) have observed that long-term limitations in activities of daily living are associated with reduced likelihood of being screened for breast cancer among women from age 40 to older than 70. They may have diﬃculty ge�ing to the oﬃce or clinic, undressing for the exam, using a tradi- tional examination table, standing or positioning for their mammograms or positioning for a clinical breast exam. Women with disabilities should have clinical breast examinations and mammog- raphy on the same schedule recommended for all women their age. Both the National Women's Health Information Center (2004) and the Agency for Health care Research and Quality (2002) recommend a mammogram every one to two years for women age 40 and older. Women at particular risk for breast cancer may be advised to be screened earlier. Factors to consider are a woman's personal or family history of breast or gyne- cologic malignancy. Women who cannot be positioned for a mammogram may be as- sessed using ultrasound, but they may need more frequent clinical breast examinations. Both the American Cancer Society (2004) and the Agency for Health Care Research and Quality (2002) have stopped recommending breast self examination because no evi- dence supports its eﬀectiveness in promoting improved patient outcomes.
When women with disabilities are treated for breast cancer, they are less likely than other women to be oﬀered breast conservation surgery at comparable stages of cancer (Caban et al., 2002). This suggests bias on the part of health care providers that body image is less important for women with disabilities. While women who have had repeated x-ray exposure in relation to managing their disability may be concerned about further exposure from mammograms or other health screening, the National Can- cer Institute (2002) maintains that the beneﬁts of health screening outweigh the risks. Still, health care providers should take steps to minimize exposure when possible. Women with disabilities are as likely as women in the general population to have cervical cancer, but health care providers, believing that they are less sexually active, may inappropriately minimize their risk for cervical cancer and their need for recom- mended screening. Some sexually transmi�ed diseases, including human papilloma virus (HPV), herpes simplex virus (HSV), human immunodeﬁciency virus (HIV) and chlamydia, have been associated with increased risk for cervical cancer (Hatcher, 2004). Women with viral STDs, particularly HPV and HIV, may warrant cervical cancer screen- ing more frequently than once per year. Treatment with immunosuppressive drugs can be associated with increased risk for cervical dysplasia. Endometrial cancer. Endometrial cancer is another one of the obesity-linked cancers
(Scho�enfeld & Beebe-Dimmer, 2004). While there is no evidence that women with disabilities are at increased risk for endometrial cancer, they are more inclined than the general population to be overweight or obese (Sharts-Hopko & Sullivan, 2003; Weil et al., 2002). Some chronic health conditions or disabilities are speciﬁcally associated with dysfunctional uterine bleeding and oligo-ovulation, including multiple sclerosis 8 PROVIDER'S GUIDE (MS), myasthenia gravis (MG) and Sjögren's syndrome. Thus, such women may be at increased risk for developing endometrial cancer. Irregular vaginal bleeding needs to be evaluated promptly.
Ovarian cancer. Women with disabilities are not at increased risk for ovarian cancer per
se, but they are more likely to have predisposing characteristics including nulliparity and less frequent use of oral contraception. Ovarian cancer can be a silent disease until late in its progression. Annual pelvic examinations are important for identiﬁcation of an adnexal mass as early as possible (Johns Hopkins Pathology, 2004). Colon cancer. Colon cancer is the fourth most common cause of cancer in women
(American Cancer Society [ACS], 2004). There is no evidence that this diﬀers in women with disabilities. Recommendations for colon cancer screening are described in Table 1. While cancer screening techniques range from fecal occult blood testing (FOBT) to colonoscopy, women with disabilities report undergoing such screening infrequently (Smeltzer & Zimmerman, unpublished data). Fecal occult blood testing should be car- ried out yearly from age 50 on (National Women's Health Information Center, 2004); however, women with mobility limitations may have diﬃculty with the procedure. Therefore, testing of stool for blood during a rectal exam should be part of every gyne- cologic exam. Because many women with disabilities are less likely than women with- out disabilities to have gynecologic exams and FOBT on a yearly basis, colonoscopy is recommended. See recommendations in Table 1.
Skin cancer. The National Women's Health Information Center (2004) recommends
that women conduct monthly self-assessment of their skin with assessment by a health professional every three years from 20 to 40 years of age, and annually beginning at age 40. Because of physical limitations, many women with disabilities are unable to perform a self-assessment of their skin without assistance. Thus, an assessment should be per- formed whenever women have physical examinations and referral made to a dermatol- ogist for any suspicious skin lesions. Because women with disabilities and other health issues are not likely to see this as a priority, extra emphasis should be given in discus- sion of the importance of assessment for skin cancer. PROVIDER'S GUIDE 9 Women with disabilities have reported that their health care providers o�en as- sume that they are asexual, sexually inactive, or uninterested in issues related to sexual function, reproduction and childbearing. As a result, they are o�en not asked about sexuality, sexual function and dysfunction, menstrual changes, contraception, sexual practices, pregnancy and menopause. Women with disabilities are sexual beings and like all women, they should be asked about sexual function / dysfunction and sexual practices by their primary health care provider. Women with disabilities that have been present from birth or from early childhood have reported that they have o�en been excluded from health education classes in school in which sexuality and reproductive issues were discussed. Further, they report that it is o�en assumed that no one would want to have a sexual relation- ship with someone who has a disability. Thus, they may have many basic, but unan- swered, questions about sexual function and unmet needs related to sexuality. Health care providers need to provide women with disabilities the opportunity to discuss issues of interest and importance to them. They should be encouraged to ask questions about sexuality, the eﬀects their disability has on sexual function, and strategies to ad- dress changes in sexual function that may occur with the speciﬁc disability (Sipski & Alexander, 1997). Instead of the spontaneity usually associated with sexual relationships, women with disabilities may have to plan ahead to make sure that they are well rested, alter their bowel and bladder management, modify their medication schedule to minimize spasticity and arrange to have a personal assistant nearby. These issues and those as- sociated with sexual function related to speciﬁc types of disabilities should be discussed sensitively in a private se�ing, without negative or biased responses on the part of the health care provider.
O�en simple solutions can be suggested to women with disabilities who experi- ence vaginal dryness secondary to their disability or medications used in its manage- ment. Wri�en and pictorial materials illustrating modiﬁcations in positions for sexual intercourse can be helpful to some women with disabilities and their partners. At times, referral to a sexual counselor may be appropriate. Even if the health care provider has the misconception that sexual relationships are impossible or that no remedy to sexual challenges exists when a disability is present (Sipski & Alexander, 1997), the issues of sexuality should not be overlooked.
Questions related to possible sexual exploitation are an important part of the assessment of sexuality in women with disabilities, particularly those with intellectual or developmental disabilities, as studies have shown that these women have a higher incidence of sexual assault (Disabled Women's Network Ontario, 2002).
10 PROVIDER'S GUIDE Menstrual Self Care Management of menstrual ﬂow can be a signiﬁcant challenge for many women with physical limitations. Among women who catheterize for bladder management, sterile technique during menses is nearly impossible, particularly in se�ings outside the home. Tampon use requires manual dexterity and balance. Some women who are away from their homes during the day have reported using multiple tampons and pads together so they can get through their work days without having to change them; however, toxic shock is a potential risk associated with this practice. For reasons such as these, over the past several decades women with disabilities have elected to undergo hysterectomy at a greater rate than the general population, and at younger ages (Nosek et al., 1997). Reports from the Center for Research on Women with Disabilities note that rehabilitation centers do not prepare women with disabilities to manage menstruation. In recent years women have been provided the options of continuous or three- month continuous oral contraception to decrease the hassle of menstrual hygiene. The Food and Drug Administration has approved menstrual suppression particularly among women with speciﬁc health-related needs (Andrist et al., 2004). Health care providers need to discuss with women who have limited mobility the beneﬁts of hor- monal reduction of menstruation frequency versus the risk of a slightly increased risk of deep vein thrombosis (DVT) or stroke. Hypercoagulability assays can be obtained to investigate a woman's risk for DVT particularly if there is a history of transient ischemic a�acks or DVT.
Some neurological conditions are associated with irregular menses. Women with MS and other neurological diseases may experience an increase in disease-related symptoms during the premenstrual or menstrual phases (Sandyk, 1995; Weppner & Brownscheidle, 1998). If it is suspected that a woman has menorrhagia, periodic hematocrits will be valuable in diagnosing anemia. Irregularity or excess bleeding can be managed with progesterone or Provera regimens, or with use of nonsteroidal anti-inﬂammatory agents in the absence of contraindications. Oral contraceptives may be considered for regula- tion of menstruation. Pre- or peri-menopausal women who become anemic can take iron supplements or daily multivitamins with iron. Women with dysfunctional uterine bleeding should be evaluated for pregnancy or cervical or endometrial abnormalities including polyps, ﬁbroids and cancer (Welner et al., 2002). PROVIDER'S GUIDE 11 Contraception is a topic that is o�en neglected by health care providers working with women with disabilities (Society of Obstetricians and Gynecologists of Canada, 2004). Health care professionals o�en assume that disability (limitations of mobility, sensory loss, reduced dexterity, intellectual disability, or altered sensation) precludes sexuality. Moreover, barriers to accessing health information and care create a potential disadvantage for women with disabilities in obtaining contraception. Nosek and associ- ates (1998) found in a national survey that women with disabilities were more likely to use permanent contraception or no contraception at all than the general population of Many women with disabilities are able and would like to have children and may prefer temporary contraception. Others may decide that they will not bear children, so permanent or long-acting contraceptive methods may be appropriate for them. Perma- nent modes of contraception include hysterectomy or tubal ligation/obstruction. When women with disabilities consider their contraceptive options, factors that need to be addressed include the quality of circulation in the lower extremities, clo�ing abnor- malities associated with their condition, degree of physical sensation, manual dexter- ity, the stability of their condition, the interaction of various contraceptives with their disabling condition or their medications, presence of depression, and any problem the woman has with menstrual hygiene (Family Health International, 1999). In addition, women with disabilities have reported that while the weight gain that is associated with hormonal contraception may be a minor issue for most women, for women with mobil- ity limitations this can be a signiﬁcant disadvantage (Weil et al., 2002). All women need to be managed individually. Women with disabilities who smoke should be informed about health risks as- sociated with tobacco use including those associated with oral contraceptives if they continue to smoke, particularly deep vein thrombosis (DVT). Eﬀorts to stop smoking should be encouraged and reinforced. As noted above in the discussion of menstrual suppression, if a woman is con- sidering hormonal contraception, risk of DVT needs to be assessed by history (for im- mobility, or history of DVT or transient ischemic a�ack [TIA]) and hypercoagulability assay before estrogen-based products are used. Transdermal contraceptive patches may be an option for women for whom oral contraceptives are contraindicated. Injectable depot-medroxyprogesterone acetate (DMPA) or the progestin-only pill could be con- sidered. Diminished eﬀectiveness of the progestin-only pill may mandate simultaneous use of barrier contraception (Hatcher, 2005). DMPA oﬀers the advantage of reducing menstrual ﬂow, even causing amenorrhea, which can be a beneﬁt for women for whom menstrual hygiene is diﬃcult. DMPA may help stabilize seizure activity among women with seizure disorders. However, it does contribute to bone loss, which is a particular concern with women with mobility limitations. Norplant is another progestin-only op- tion, though the issue of irregular break-through bleeding may be particularly stressful for women for whom menstrual hygiene is a challenge. 12 PROVIDER'S GUIDE Contraception (cont.) Anticonvulsant medications may reduce the eﬃcacy of hormonal contraceptives (International Planned Parenthood Federation, 1999). It remains unresolved whether hormonal contraceptives exacerbate MS (Family Health International 1999); it appears that they confer some protection against rheumatoid arthritis. Contraceptives with high doses of synthetic estrogens have been associated with exacerbation of lupus symptoms; progesterone-only products, barrier contraception or intrauterine devices (IUDs) are alternatives for women with lupus (Society of Obstetricians & Gynecologists of Canada, Intrauterine devices (IUDs) may increase menstrual ﬂow. In addition, women who have diminished pelvic sensation may be unable to detect IUD-associated pelvic inﬂammatory disease (PID) or ectopic pregnancy should they occur. Spasticity of the lower extremities can increase the diﬃculty of insertion of an IUD . Women or their partners must be able to assess the presence of the IUD string weekly. Women with car- diac valvular disease need to be aware that IUD insertion is associated with transient, minimal bacteremia (Welner, 1999). Barrier contraception requires intact balance, physical dexterity and hand coor- dination or the willingness of the woman's sexual partner to assume responsibility for its use. Women at risk for latex allergies need to be cautioned to select products accord- PROVIDER'S GUIDE 13 While women with disabilities are less likely to become pregnant and bear chil- dren than women in general (Nosek et al., 1997), many women with disabilities and chronic health or conditions share the same desire to bear and parent children as other women. Speciﬁc pregnancy-related concerns vary by type of disability, and speciﬁc recommendations for women with disability may be obtained from advocacy groups particular to their condition. (See Appendix A.) Health care providers' nonjudgmental acceptance of a woman's choice is an essential component to quality health care. Some health care providers may assume that risks of poor outcomes among women with dis- abilities are greater than they actually are. Ideally, when informing a woman that she is pregnant, the health care provider can ask the woman whether or not the pregnancy is intended or desired. If it is not, then discussing implications of a positive pregnancy test outcome will be a priority. Women with disabilities have frequently been discour- aged from becoming pregnant or continuing a pregnancy, or turned away by health care providers who lack experience in managing pregnancy among women with their speciﬁc disability. These are discouraging and frightening messages at a time when all women need knowledgeable support and assistance. Some women receive care that does not meet standards of practice. For example, Nosek and her colleagues (1997) have reported that while most women are weighed frequently during pregnancy to ensure appropriate growth of their babies and monitor for pregnancy-induced hypertension, women who are not able to stand may never be weighed throughout their pregnancies due to lack of accessible scales.
Women with disabilities and their babies occasionally will need the resources of a collaborative team approach that might include disability specialists. Their expertise and anticipatory guidance can ensure that the woman is properly supported through her pregnancy and postpartum, that contingencies are planned for and addressed, and that the woman's feelings of comfort and security are enhanced. In turn, this will opti- mize her self-conﬁdence to begin parenting. Some of the ways that pregnancy may aﬀect women with disabilities include de- creased mobility, ﬂuid retention, bladder dysfunction, and increased incidence of vagi- nal and urinary tract infections. Pregnancy causes a shi� in the center of gravity, and women may be at increased risk for loss of balance and falling. Women with disabilities that aﬀect gait may ﬁnd that they require greater use of assistive devices such as canes or walkers, or of a wheelchair some or all of the time during the last trimester of preg- nancy because of increased fatigue and a change in their center of gravity. They may be more likely to fall if they experience changes in balance or gait. In addition, potential new pressure points may develop as the woman's body changes. Common symptoms of pregnancy may be more severe than among women without disabilities; in addition, pregnancy may alter the course of the disability, temporarily or even permanently.
Because of the potential impact of having a disability on pregnancy, women with physi- cal disabilities and chronic health conditions require care from the preconception period throughout pregnancy and the postpartum period.
14 PROVIDER'S GUIDE Pregnancy (cont.) Preconception Care
Preconception care is recommended for couples considering pregnancy. For women with disabilities and chronic health conditions, the support of a partner and/ or other family members or friends is a priority in ensuring positive outcomes for the woman and her child. Preconception care and counseling, ideally involving both the physician and the woman herself, as well as the obstetrician, nurse midwife or nurse practitioner, focuses on assessing the woman's health status prior to pregnancy and anticipating particular risks that she and her baby may encounter. The provider who manages health care for the woman with a disability may be able to recommend an ob- stetrician or other health care provider who has experience working with women with a particular type of disability. Ideally, all women have one or more obstetrical-gynecologi- cal visits in the months before conception. Of particular importance is the woman's nutritional status. All women of child- bearing age should consume 400 micrograms of folic acid daily to prevent neural tube defects (CDC, 2003). Women who have already had a pregnancy aﬀected by neural tube defect as well as women who have spina biﬁda may discuss with their health care provider the option of increasing their intake of folic acid to 4 milligrams (4000 micro- grams) for one month prior to a�empting pregnancy and during the ﬁrst three months of pregnancy (March of Dimes, 2001). All women's risks associated with childbearing and neonatal outcomes are lower when they are within their normal weight range at the time of conception. The woman's drug regimen should be reviewed for safety dur- ing pregnancy; some medications may be discontinued at least during the ﬁrst trimester and in other cases, substitutions may be made. Preconception care can also entail ge- netic testing and counseling for both partners, when indicated.
All pregnant women require prenatal care. The general population of women at low risk should have monthly visits during the ﬁrst two trimesters, visits every two weeks during the seventh and eighth month, and weekly visits beginning in the ninth month until delivery. Women with a disability may require more frequent visits throughout their pregnancy. Prenatal visits involve monitoring the health status of the woman and her fetus, including intrauterine growth; monitoring and managing symptoms related to pregnan- cy or to the woman's disability; assessing the woman and her partner's ability to adapt to changes associated with pregnancy and to anticipate needs a�er delivery; prepar- ing the woman for labor and delivery, postpartum and parenting; and providing the woman and her partner with the opportunity to discuss any issues related to pregnancy, labor and delivery and postpartum (Smeltzer, 2002; Rogers & Matsumura, 2005).
PROVIDER'S GUIDE 15 Pregnancy (cont.) Nutrition continues to be important throughout pregnancy. It is more impor- tant for women with mobility limitations than for the general population to avoid excess weight gain during pregnancy as the weight can impede their balance or ability to transfer, make it more diﬃcult for caregivers or partners to provide assistance and increase the potential for skin breakdown and infection. Prenatal vitamins are recom- mended for all pregnant women. Of particular importance are folic acid, iron, calcium and phosphorus. Constipation may be a greater issue during pregnancy for women with disabilities or chronic health conditions. A diet high in ﬁber, particularly fruits and vegetables, and high ﬂuid intake is recommended and stool so�eners may be necessary.
Pregnant women with disabilities are encouraged to continue to exercise to the extent that they are able. Some women with disabilities are more prone to muscle spasms during pregnancy. A regular exercise program within the woman's abilities can reduce spasms and spasticity. Range of motion exercises may be helpful. Se�ing up an exercise plan with a physical therapist or other knowledgeable health professional may Monitoring the woman's weight and identiﬁcation of excess weight gain or loss is important. Therefore, strategies to weigh women who are unable to stand on a tradi- tional medical scale should be identiﬁed and implemented to assure periodic weighing during pregnancy. These might involve purchase of an accessible wheelchair scale that permits a wheelchair, scooter or walker to be moved onto a scale or use of an accessible scale at a nearby hospital.
Fatigue is a common concern during pregnancy for all women. Rest during the day is helpful, in addition to regularly ge�ing seven to eight hours of sleep at night. Stress management methods such as meditation may help with sleep disruption, as does regular exercise. For some women with heat-sensitive disabilities, such as MS, in- creased body temperature associated with pregnancy is particularly bothersome. They may beneﬁt by limiting their exercise to earlier parts of the day, exercising in air-condi- tioned se�ings during warmer seasons, or taking cool baths.
Labor and Delivery
Most disabilities do not interfere with a woman's ability to have a normal labor and delivery. The need for a cesarean delivery should be based on each woman's overall health status, the progress of labor, and the well-being of her fetus, rather than on the fact that she has a disability. Some women may not feel uterine contractions and they should be instructed to watch their abdomen for muscular activity. Some women in late pregnancy may wear a uterine monitor. Women should plan with their obstetricians how labor and delivery will be man- aged. Alternative positioning for delivery, for example side-lying, may be required if spasticity is a problem. In addition, women can plan with their obstetricians and anes- thesiologists in advance about the need and desirability of having an epidural anesthe- sia or other types of pain management strategies. 16 PROVIDER'S GUIDE Pregnancy (cont.) Women with disabilities are able to breastfeed as o�en as other women. Some women may beneﬁt from the use of adaptive parenting equipment such as baby slings (See Appendix A) . In fact, breastfeeding eliminates the need for preparation of formula and clean-up, and so is easier for these women. Some may choose to have their partner supplement the feedings with a bo�le during the night. If women have altered sensa- tion in their breasts, they will need to be taught how to detect mastitis by appearance and palpation if possible. Women who are taking medications or using nutritional supplements should discuss these ma�ers with their health care providers, as metabo- lites of some medications and supplements pass into the breast milk and may be harm- ful to the baby. Unique Considerations or Concerns
Some disabilities are associated with particular concerns or risks. For example, women with spinal cord injury are more likely to experience pregnancy-induced hy- pertension and autonomic dysreﬂexia than the general population. Women with MS may experience an exacerbation of their disease within one to three months postpartum, although, it usually abates within a few months. Women with systemic lupus erythema- tosus (SLE) are at increased risk for thrombotic events (e.g., DVT, pulmonary embolus, cerebrovascular a�ack [CVA]) throughout their pregnancies. In addition, women with SLE are at greater risk for fetal loss throughout pregnancy, intrauterine growth retarda- tion, premature placental aging with thrombosis, and pregnancy-induced hypertension (i.e., preeclampsia). Any woman with a disability and her health care providers are well-advised to contact the national advocacy group associated with that condition for information on particular issues related to pregnancy. See list of selected groups in Ap- If there are concerns about the safety of a woman with a disability becoming pregnant and delivering a healthy baby, the woman should be referred to a women's health care specialist knowledgeable about her particular disability or chronic health condition for comprehensive discussion of her pregnancy options. PROVIDER'S GUIDE 17 Women with disabilities have fewer children than the general population, but in general they are at no greater risk for infertility. If a couple experiences infertility they need not assume that it is related to the woman's disability. When infertility becomes a concern for a couple in which the woman has a disability, counseling and guidance should include consideration of the interaction of the woman's disabling condition with infertility treatment, childbearing and childrearing, as well as the commitment of her partner to the pursuit of infertility treatment. Women with possible ovulatory dysfunction can be evaluated and oﬀered treat- ment options. Women with SCI who undergo evaluation for ovulatory dysfunction may require monitoring and preparation for treatment of autonomic dysreﬂexia. Women with degenerative hips or contractures may not tolerate positioning for dye injection to assess tubal patency. 18 PROVIDER'S GUIDE Urinary tract infection
Urinary tract infections (UTI) are more common among women with disabili- ties than among the general population. While all UTIs must be individually managed, there are some general recommendations for the treatment of UTIs and for bladder management. All women with frequent or chronic urinary tract diﬃculties should un- dergo baseline urodynamic evaluation to determine appropriate bladder management. Women with signiﬁcant urinary tract dysfunction will need to be collaboratively man- aged by a urologist in collaboration with their other health care providers. Neurological conditions, including MS and brain or spinal cord injury, are o�en associated with alteration in bladder control. Retention as well as incontinence may result. Loss of urinary control can be managed by the following methods singly or in combination: bladder training regimens such as intermi�ent self-catheterization, anti- cholinergic agents, indwelling catheters, or urostomy pouches. Women with a neuro- genic bladder diagnosis require renal ultrasounds to rule out the development of hydro- nephrosis and nephrolithiasis, as determined by the urologist.
Asymptomatic bacteriuria or bladder bacterial colonization need not be aggres- sively managed. Urine is not considered infected in the absence of pyuria, and home dipsticks can be used to monitor this (NIDDK, 2003). When a woman is pregnant, UTIs are more likely to ascend to the kidneys (National Women's Health Information Center, 2002). Taking vitamin C or drinking cranberry juice and adequate ﬂuids will discourage the development of UTIs by reducing the urinary pH level (National Women's Health Information Center, 2002). Cranberry extract tablets are an alternative to reduce urinary pH. Probiotic management with Loctobacillus (e.g. in live culture yogurt or in tablets) helps restore normal vaginal ﬂora and may prevent urinary tract infection (Stapleton, 2003). Women who are prone to UTIs may want to avoid use of a diaphragm for con- traception; it can impede complete bladder emptying (National Women's Health Infor- mation Center, 2002). If a UTI does develop, the least aggressive antimicrobial agent to which the pathogen responds should be used. Periodic bladder cystoscopy may be indicated for women with an indwelling catheter to rule out bladder stones.
Common non-sexually transmi�ed types of vaginitis include candida or "yeast" vaginitis, bacterial vaginosis, and noninfectious vaginitis. Candida is normal vaginal ﬂora, but infection may fulminate when pH level changes or when the normal ﬂora are otherwise disrupted by metabolic or disease-related change, including pregnancy and the onset of diabetes. As with candida vaginitis, bacterial vaginosis also emerges when the normal ﬂora are disrupted, and is even more prevalent than candida vaginitis. Non- infectious vaginitis may result from allergic reaction or irritation from vaginal sprays, douches, spermicides, perfumed soaps, detergents or fabric so�eners; from atrophic changes associated with menopause; or from irritation by vaginal secretions that build up (NICHD, 2004).
PROVIDER'S GUIDE 19 Infection (cont.) Women who use wheelchairs are at especially increased risk for vaginitis be- cause of chronic moisture and irritation of the labial area related to prolonged si�ing. Women who are on chronic corticosteroid therapy or have disabilities related to diabe- tes are also predisposed to recurrent candida vaginitis. Candida can be treated by topi- cal and oral antifungal medications. Antifungal powder, which also absorbs moisture, can be applied prophylactically to the perineum. Bacterial vaginosis will require anti- bacterial medications. Recurrent vaginitis should be assessed prior to treatment. In ad- dition to noninfectious causes, vaginitis can be caused by various sexually transmi�ed organisms. Noninfectious vaginitis is managed by removal of the cause. If it is associ- ated with menopause, topical or oral estrogen may alleviate symptoms. The National Vaginitis Association (2003) recommends the following prevention strategies: avoid douching, careful and immediate drying a�er washing or bathing, ex- clusive use of co�on underwear and pantyhose with a co�on crotch, front to back wip- ing a�er bowel movement, and avoidance of all scented bath or perineal products.
Sexually Transmi�ed Diseases
When access to reproductive health services and sexual health information is limited, women are at increased risk of sexually transmi�ed diseases (STDs). Women with disabilities are o�en presumed by health care providers not to be sexually active, and they may experience barriers to sexual health care. It is as important for women with disabilities to be assessed for sexually transmi�ed diseases as for all other women. Moreover, health care providers need to be alert to the possibility that STDs may be contracted through nonconsensual or forced sexual activity, especially among women with developmental or intellectual disabilities.
Some STDs, such as chlamydia, are "silent" in most women. Women with pelvic sensory impairments or neuropathy may not report pain, burning or other discomforts. They may experience less speciﬁc symptoms such as increased spasticity or malaise (Welner, 1999). Women with vision loss may not be aware of lesions or discharge; they are dependent on a partner or caregiver to notice and describe any abnormalities to Health care providers need to be a�entive to altered manifestations of STDs in women with disabilities, such as increased spasticity or fatigue in women with spinal cord injury. Health care providers should consider the possibility that pelvic scarring and adhesions may be related to an STD. Women with disabilities have the same risks for blood-borne viral infections as all other women; they may be infected by sexual con- tact, contact with blood or body ﬂuids, trauma, shared needles or transfusion.
20 PROVIDER'S GUIDE Infection (cont.) Women who are at risk for skin breakdown, including women whose ability to change positions is extremely limited or those with loss of sensation, are prone to pres- sure ulcer formation and infections. These infections can lead to life-threatening sep- sis. Further, pressure ulcers may aﬀect women's ability to use a wheelchair and severe pressure ulcers may require surgical treatment and skin gra�s. Women and their health care providers need to be aware of early signs of skin breakdown and preventive strate- gies including changing positions, use of cushions, proper ﬁ�ing of prosthetics or or- thotics, and good nutrition. Women, their partners, caregivers, or family members need to inspect the woman's skin daily. Women at risk for pressure ulcers should have their skin inspected thoroughly at each health care encounter. Because pressure ulcers are costly as well as diﬃcult to heal, referral to a wound care specialist may be warranted to prevent and treat pressure ulcers. PROVIDER'S GUIDE 21 In the last twenty years, women have become more aware of options for enhanc- ing the quality of life and promoting health during perimenopause and menopause. Women need general information about health promotion during menopause as well as speciﬁc information about symptom management and the potential eﬀect of menopause on their disabilities (Morrow, 2002).
Women with a number of disabilities or chronic health conditions may experi- ence menopause earlier than the average age of 51. Depending on the speciﬁc disability or chronic health condition, menopause may be triggered by circulatory, endocrine, im- munological or neurological alterations (Welner, Simon & Welner, 2002). Aging aﬀects changes in cardiovascular, respiratory, metabolic, muscular, skeletal, skin and connec- tive tissue, endocrine, and sexual function. Estrogen, which declines throughout peri- menopause, aﬀects all body systems. These changes may be more signiﬁcant among women with disabilities than the general population (Welner, Simon & Welner, 2002). Women with mobility limitations face increased risks for conditions that are as- sociated with menopause, including heart disease and osteoporosis. Women with mul- tiple sclerosis (MS) may ﬁnd hot ﬂashes more debilitating than other women because of their sensitivity to thermal ﬂuctuation and because MS is estrogen-sensitive. Women with conditions that aﬀect their bowel and bladder may have an increase in genitouri- nary problems including urinary tract infections, kidney and bladder stones and poorer renal function. Women with autoimmune diseases have complex and varied responses to changes in their estrogen levels. Women for whom skin integrity is an issue, such as women with SB, SCI, or MS, may have increased diﬃculty with decubiti a�er meno- pause. In addition, women with MS, SCI and seizure disorders may be more sensitive than other women to thermal and vasomotor changes (Welner, Simon & Welner, 2002), and may report an increase in symptoms (fatigue, muscle weakness). Women with cog- nitive and mood changes associated with their disabilities, including those with MS and brain injury, may ﬁnd the increased mood, sleep and memory changes associated with menopause to be particularly troublesome. Practice in regard to hormone replacement therapy (HRT) has undergone a major change since 2003. Current recommendations include using HRT in the lowest doses possible for the shortest time possible to manage disruptive menopausal symptoms (National Women's Health Information Center, 2003). Concerns that were formerly regarded as potential indications for HRT, such as prevention of heart disease or os- teoporosis, can be managed more eﬀectively by other means. Women with menstrual irregularities may choose to use supplemental hormonal agents or low-dose oral con- traceptives for cycle control and regulation of ﬂuctuating estrogen levels. Women with alterations in mobility may use transdermal estrogen with cyclic progestin withdrawal, to avoid the increased risk for DVT associated with oral contraceptives (Welner, Simon & Welner, 2002). As noted in the discussion of contraceptive options above, the weight gain associated with hormonal therapies may be of greater signiﬁcance for women with mobility limitations than for other women (Weil et al., 2002).
22 PROVIDER'S GUIDE Menopause (cont.) Women may have speciﬁc concerns about the interactions among the medica- tions they use to manage their disability or chronic health condition and medications available for menopause-related problems. Some absolute contraindications to hormone therapy include acute TIA, acute stroke, pulmonary embolism, SLE, and recent DVT. HRT use has been linked to increased seizure activity among women with seizure disor- ders although the results of research on this topic are mixed (Welner, Simon & Welner, 2002). When women with rheumatoid arthritis use HRT, menopausal symptoms and disease activity may be reduced. HRT appears to slow progression of osteoarthritis. MS may respond positively to estrogen and negatively to dropping estrogen levels, and women may experience improvement in MS-related symptoms when they use HRT.
Alternatives to HRT include medications that target estrogen receptors, such as selective estrogen receptor modulators (SERMS), which beneﬁt the lipid proﬁle as well as bone health. Phytoestrogens and isoﬂavinoids, substances derived from plant sourc- es such as soy products, have a variety of estrogen-like properties and act on estrogen receptors in a manner similar to SERMS. Red clover derivatives also act on estrogen re- ceptors and may improve vasomotor instability. There is li�le information on the safety of other products such as black cohosh, or on the interaction of various alternative prod- ucts with underlying disabilities or with the medications used to manage them. Women who are interested in alternative products or nutritional supplementation are advised to work with health care providers who are knowledgeable in the ﬁeld of complemen- tary and alternative medicine (Welner, Simon & Welner, 2002). The National Institutes of Health National Center for Complementary and Alternative Medicine (NCCAM) is a valuable resource, and is listed in the Appendix.
Lifestyle recommendations that may beneﬁt women with disabilities include performing Kegel exercises if they are able; establishment of a regular exercise regimen to the extent possible; a�ention to sleep alterations; participation in a support group; en- gagement in regular recommended screening examinations; a�ention to dental health; eating a healthy diet with emphasis on fruits, vegetables and ﬁber; stress management; smoking cessation; and maintenance of body mass index between 19 and 25 (Vandena- kker & Glass, 2001). PROVIDER'S GUIDE 23 Bowel and Bladder Dysfunction Women with disabilities that can potentially impair bowel and bladder function, resulting in incontinence or constipation, require a�ention to dietary and other factors that can aﬀect elimination. Health care providers need to ask women about their elimi- nation pa�erns and the routines that help them regulate elimination pa�erns. It should not be assumed that bowel and bladder dysfunction is inevitable and that treatment is futile because of the presence of a disability. Women may beneﬁt from referral to spe- cialists who can help them with bowel or bladder regimens to maximize control and predictability in their lives. 24 PROVIDER'S GUIDE It is important to address prevention of osteoporosis, osteoporotic fractures and secondary disabilities with women with disabilities and chronic health conditions. Osteoporosis is characterized by low bone mineral density (BMD) and compromised bone strength predisposing to bone fragility and increased risk of fracture. It is widely recognized that the risk for loss of bone mass and osteoporotic fracture increases in post-menopausal women (NIH, 2001; U.S Department of Health and Human Services [USDHHS], 2004). BMD testing is recommended for all women 65 years of age and older and for post-menopausal women younger than 65 years of age who have one or more risk factors in addition to gender and menopause as soon as the risk factors are identiﬁed (U.S. Preventive Services Task Force, 2002; National Osteoporosis Foundation, 2003). Although a growing body of research suggests that many women with disabili- ties develop low bone mass at a younger age than other women and have more osteo- porosis risk factors (Smeltzer, Zimmerman & Caprio�i, 2005), BMD testing is o�en not made available (Shabas & Weinrub, 2000; Smeltzer, Zimmerman, Caprio�i & Fernandes, 2002). Studies of the usefulness of clinical indices developed to predict bone loss have largely excluded women with disabilities. Thus, health care providers and women with disabilities themselves need to carefully assess the risks for each woman based on her own risk proﬁle and obtain baseline and periodic BMD testing to monitor bone health. Women with long-standing disability, particularly disabilities with onset at birth or early in life (e.g., spina biﬁda, cerebral palsy), are unable to achieve an adequate peak bone mass if they have been unable to bear weight on their extremities or if their dis- ability limits their ability to participate in weight-bearing exercise. Thus, they are likely to have low BMD at a very early age. As with all women, bone loss in women with disabilities dramatically increases as they approach menopause. If they have not under- gone BMD testing before, they should have BMD testing at the time of menopause to establish a baseline and to permit informed decision making about treatment. Women with signiﬁcant mobility limitations or who are unable to participate in weight-bearing activities and women who have had prolonged exposure to corticosteroids or anticon- vulsant therapy should be tested before menopause as soon as their osteoporosis risk is identiﬁed to enable initiation of strategies to prevent or slow bone loss along with strategies to reduce risk for falls. Treatment should be provided for women with dis- abilities with low BMD to prevent or slow bone loss; follow-up BMD testing is needed to monitor the progression of bone loss and eﬀectiveness of treatment. In the absence of speciﬁc recommendations for treatment to prevent, slow or treat osteoporosis, preven- tion and treatment strategies for women with disabilities parallel those for women with- out disabilities. Most women in the U.S. have an inadequate dietary intake of calcium (USDHHS, 2004) and may receive less vitamin D due to lack of exposure to sunlight secondary to their disability. Thus, an increase in calcium along with vitamin D is indi- cated. Although there is some concern among clinicians about the increased risk of renal calculi with an increased calcium intake in sedentary women, this risk can be substan- tially reduced if women take steps to remain adequately hydrated. Periodic monitoring of a woman's serum and urinary calcium levels may alleviate clinicians' concerns about increased risk for formation of renal stones.
PROVIDER'S GUIDE 25 Osteoporosis (cont.) Medications (e.g., bisphosphonates [Fosamax, Actonel], raloxifene [Evista], calcitonin) designed to reverse or slow bone loss are currently available. The bisphos- phonates must be used with caution because of the signiﬁcant gastrointestinal eﬀects that can occur if instructions in their use are not followed. Women whose disability keeps them from si�ing up for at least 30 minutes (preferably 60 minutes) a�er taking a bisphosphonate are not good candidates for its use. Zoledronic acid (Zometa), the most potent bisphosphonate, may be useful in women with disabilities because it is admin- istered intravenously once a year, avoiding the gastrointestinal side eﬀects of daily or weekly oral bisphosphonates (Reid et al., 2002). Clinical studies are needed to determine its eﬀectiveness in women with disabilities. Zoledronic acid should not be used if there is a possibility of pregnancy. Another new alternative is ibandronate (Boniva), a recently approved oral bisphosphonate with a once-a-month dose. (MedlinePlus 2005). Lifestyle changes (smoking cessation, reduced caﬀeine and alcohol intake) are other osteoporosis preventive strategies worth discussing with women with disabilities. Exercise within the woman's physical abilities is an important strategy to maintain bone loss; however, many women with disabilities, including those who are ambulatory, tend not to partici- pate in weight-bearing exercise. Identiﬁcation of a safe program of exercise and discus- sion about its importance in maintaining bone mass may increase women's willingness to participate in some weight-bearing exercise, when possible. 26 PROVIDER'S GUIDE Violence and Abuse Women with disabilities are more vulnerable than other women to physical as- sault, sexual assault, verbal and emotional abuse and are at risk for abuse by intimate partners, family members, paid caregivers, health care workers, and strangers. Sixty- two percent of a national sample of women with physical disabilities reported emotion- al, physical, or sexual abuse (Nosek, Howland, & Young, 1997). It has been estimated that women with disabilities are abused 3 to 10 times more o�en than their peers with- out disabilities (Sobsey & Doe, 1991). They endure abuse longer and experience types of violence that women without disabilities are unlikely to experience such as: removal/ destruction of assistive devices (e.g. walker, TTY text telephone, cane), withholding of medications, and denial of access to transportation and health care (Nosek, Howland, & Young, 1997). Women with disabilities, who are dependent on others, including their abusers, are o�en unable to extricate themselves from abusive relationships and situa- Women with developmental disabilities, including those with intellectual disabil- ities and those with hearing or vision loss, are at particularly high risk for violence and abuse. These women experience physical or sexual assault at a rate estimated to be 4-10 times higher than other women, and are more likely to be victims of emotional or sexual abuse from personal care a�endants and health care workers than women without dis- abilities (Sobsey & Doe, 1991).
Complicating the issue of violence against women with disabilities is the lack of domestic violence/sexual assault (DV/SA) services that consider the unique needs of women with disabilities. Shelters and other facilities are o�en inaccessible and lack the accommodations (e.g., sign language interpreters, barrier-free facility, alternate formats for wri�en materials) essential for women with disabilities to obtain services and support. It is essential to ask women about abuse in a safe private se�ing without family members or caregivers present. To assess women with disabilities for abuse, it is important to ask not only about physical or sexual abuse, but also types of abuse that are speciﬁc to women with various disabilities. Positive responses to any questions on the Abuse Assessment Screen-Disability (AAS-D) indicate the need for further as- sessment. In addition, the health care provider must determine if the woman is able to leave an abusive relationship and knows how to obtain assistance. Providers should be knowledgeable about mandatory reporting laws. Health care providers also need to be knowledgeable about community DV/SA services and share this information with women, as appropriate. Moreover, health care providers need to be aware of state laws dictating their reporting requirements.
PROVIDER'S GUIDE 27 Violence and Abuse (cont.) Abuse Assessment Screen-Disability (AAS-D) 1. Within the last year, have you been hit, slapped, kicked, pushed, shoved or other wise physically hurt by someone? 2. Within the last year, has anyone forced you to have sexual activities? 3. Within the last year, has anyone prevented you from using a wheelchair, cane, respiratory, or other assistive devices? 4. Within the last year, has anyone you depend on refused to help you with an important personal need, such as taking your medicine, ge�ing to the bathroom, ge�ing out of bed, bathing, ge�ing dressed, or ge�ing food or drink? Center for Research on Women with Disabilities. Abuse Assessment Screen-Disability. h�p://www.bcm.edu/crowd/?PMID=1325m, Accessed September 2, 2005. 28 PROVIDER'S GUIDE Psychosocial / Mental Health Issues Women with disabilities are at risk for depression and mental health disorders because of the isolation, dependence, low self-esteem and lack of intimate relation- ships with others that o�en occur with disability (Nosek, Hughes, Swedlund, Taylor & Swank, 2002). However, clinical depression and other mental health disorders should not be considered a normal response to having a disability. Women with disabilities should be assessed for depression during each health care visit. Changes in women's medications, home situation, support systems, and stress level should be assessed. Their usual coping strategies should be identiﬁed and unhealthy methods of coping (e.g., alcohol use, substance abuse, smoking) identiﬁed and addressed. Pharmacologic and non-pharmacologic methods of addressing depression and other mental health issues should be oﬀered to women with disabilities just as they would be to other women. The presence of a disability should not preclude use of medication, counseling and psycho- therapy, if warranted. The CAGEAID (see below) is a brief screening tool to identify individuals at risk for substance abuse, in particular alcohol abuse. If the individual answers yes, the woman is asked if each incidence has occurred in the past year. If there are 1-2 positive responses, alcohol-related problems may be present. With 3-4 positive responses, alco- hol dependence may be an issue, necessitating intervention. The CAGEAID screening tool's name is derived from Cu�ing down, Annoyance by criticism, Guilty feelings, and Eye-openers) Adapted to Include Drugs C: Have you ever felt that you should CUT DOWN on your drinking (or drug use)? A: Have people ANNOYED you by criticizing your drinking (or drug use)? G: Have you ever felt bad or GUILTY about your drinking (or drug use)? E: Have you ever had a drink (or used drugs) ﬁrst thing in the morning to steady your nerves or get rid of a hangover (or to get the day started)? (EYE-OPENER) Brown, R.L. (1992). Identiﬁcation and oﬃce management of alcohol and drug disor- ders. In: Fleming, M.F., and Barry, K.L., eds. Addictive Disorders. St. Louis: Mosby PROVIDER'S GUIDE 29 Aging with a Disability Many women with disabilities identify aging with a disability along with con- cern about further disabilities or progression of their disability to be among their great- est worries or concerns (Smeltzer & Zimmerman, 2005). Today, the typical life span of women with disabilities is close to that of women without disabilities. In previous generations, many people with long-term disabilities did not survive into older adult- hood due to complications of secondary conditions associated with their disabilities. As women with disabilities age, they may experience the onset of new health problems and changes in functional status (Campbell, Sheets & Strong, 1999). Thus, women with disabilities o�en have a smaller margin of safety and lower level of function because of aging combined with the limitations of their pre-existing disability. The interaction of aging and disability on health and access to care must be considered. For example, people with spinal cord injuries or polio survivors can begin to show the signs of aging earlier than those without disabilities. Some people with cerebral palsy report increased spasticity as well as musculoskeletal, urinary and gastro- intestinal problems as they get older. Some women report increasing muscle and joint pain, discomfort and dysfunction with aging due to the life-long wear and tear resulting from an altered gait or use of the upper extremities with crutch walking or propelling themselves in a manual wheelchair. Psychosocial issues may occur with aging related to concerns about the con- tinued availability of care and services (Nosek, 2000). There may be concerns about decreasing availability of supportive friends and family as they, too, age and develop chronic illnesses that may limit the support and assistance that they are able to provide. Women with disabilities should be actively involved with life planning as they age, and develop speciﬁc plans about housing, ﬁnances, and health-related arrangements. Health care providers can be helpful in encouraging women with disabilities who are aging to consider developing life plans to minimize their anxiety and concern about these issues. 30 PROVIDER'S GUIDE We guide will assist you in providing high quality care to women with physical disabilities and chronic health conditions. In line with "The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities", this guide will help meet the four goals of this "Call to Action" (The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities. 2005.
Increase understanding nationwide that people with disabilities can lead long, healthy and productive lives.
Increase knowledge among health care professionals and provide them with tools to screen, diagnose, and treat the whole person with a disability with Increase awareness among people with disabilities of the steps they can take to develop and maintain a healthy lifestyle.
Increase accessible health care and support services to promote independence for people with disabilities.
The information needed by clinicians to provide high quality care to women with physi- cal disabilities and chronic health conditions can be summarized simply: most women with disabilities have the same health care needs as women without disabilities, but may also have additional unique health needs. In addition, women with disabilities of- ten face barriers that make it diﬃcult or impossible for them to receive even basic health care. An appreciation for these similarities and the diﬀerences goes a long way in pro- viding the sensitive and digniﬁed health care that all women want and deserve. PROVIDER'S GUIDE 31 Agency for Health Care Research and Quality (2002). U.S. Preventive Services Task Force. Screening for breast cancer. AHRQ, Rockville MD. h� p://www.ahrq.gov/clinic/ uspstf/uspsbrca.htm Accessed April 15, 2005.
Agency for Health Care Research and Quality (2003). U.S. Preventive Services Task Force. Screening for Cervical Cancer. AHRQ, Rockville MD. h� p://www.ahrq.gov/clin- ic/uspstf/uspscerv.htm. Accessed April 15, 2005.
American Cancer Society (2004). Colon and rectal cancer. www.nci.nih.gov/cancertop- ics/types/wyntk/colon-and-rectal Updated March 10, 2004. Accessed November 11, American Cancer Society (2004). Role of breast self-examination changes in guidelines. Andrist LC, Arias RD, Nucatola D, Kaunitz AM, Musselman BL, Reiter S, Boulanger J, Dominguez L, Emmert S. (2004). Women's and providers' a� itudes toward menstrual suppression on extended use of oral contraceptives. Contraception 70(5):359-63.
Berkman, L. & Breslow, L. (1983). Health and ways of living: The Alameda County study. New York: Oxford University Press.
Be� er Health Channel (2004). Pap tests and women with disabilities. www.be� er- health.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Pap tests and_women with disabilities Accessed November 20, 2004 Brown, R. L. (1992). Identiﬁ cation and oﬃ ce management of alcohol and drug disor- ders. In: Fleming, M.F., & Barry, K.L., eds. Addictive Disorders. St. Louis: Mosby Year- Caban, M.E., Nosek, M.A., Graves, D., Esteva, F.J. & McNeese, M. (2002). Breast carci- noma treatment received by women with disabilities compared with women without disabilities. Cancer, 94(5), 1391-1396.
Campbell, M. L., Sheets, D., & Strong, P. S. (1999). Secondary health conditions among middle-aged individuals with chronic physical disabilities: Implications for unmet needs for services. Assistive Technology. 11: 105-122.
Center for Research on Women with Disabilities. Abuse Assessment Screen-Disability. www.bcm.edu/crowd/?PMID=1325m Accessed September 2, 2005. Centers for Disease Control and Prevention (2004). Adult immunization schedule. www.cdc.gov/nip/recs/adult-schedule.htm Accessed October 27, 2004.
Centers for Disease Control and Prevention (2003). Folic acid. Frequently asked ques- tions. www.cdc.gov/doc.do/id/0900f3ec80000d558 Accessed November 3, 2004.
Centers for Disease Control and Prevention (1997). Morbidity and Mortality Weekly Report, 46(RR-08), 1-24.
Coyle, P.C. & Santiago, M.C. (2002). Health care utilization among women with physi- cal disabilities. Medscape General Medicine, 4(3). www.medscape.com/viewarti- Disabled Women's Network Ontario (2002). Sexual assault and women with disabilities. h� p://dawn.thot.net/sexual_assault.htm Accessed April 15, 2005.
Family Health International (1999). Disabled have many needs for contraception. Net- work, 19(2). www.� i.org.en/RH/Pubs/Network/v19_2/disableneeds.htm Hatcher, R.A. (2005). Contraceptive technology, 18th ed. Easthamptom, MA: Ardent Hernán, M. A., Jick, S. S., Olek, M. J. & Jick, H. (2004). Recombinant hepatitis B vaccine and the risk of multiple sclerosis. A prospective study. Neurology, 63:838-842.
Iezzoni, L., McCarthy, E. P., Davis, R. B., Harris-David, L., & O'Day, B. (2001). Use of screening and preventive services among women with disabilities. American Journal of Medical Quality. 16(4):135- 144.
International Planned Parenthood Federation (1999). Statement on contraception for women with medical disorders. www.ippf.org/medical/imap/statements/eng/1999_06a.
htm Accessed July 26, 2004.
Jans, L., & Stoddard, S. (1999). Chartbook on Women and Disability in the United States. An InfoUse Report. Washington, D.C.: U.S. National Institute on Disability and Reha- Johns Hopkins Pathology (2004). Ovarian cancer. www.ovariancancer.jhmi.edu Ac- cessed November 10, 2004.
Kopac, C.A., Fritz, J. & Holtz, R.A. (1998). Gynecologic and reproductive services for women with developmental disabilities. Clinical Excellence for Nurse Practitioners, 2(2), 88-95.
Lanig, I.S., Chase, T.M., Bu� , L.M., Hulse, K.L., & Johnson, K.M.M. (1996). A practical guide to health promotion a� er spinal cord injury. Gaithersburg, MD: Aspen Publishers, Inc.
March of Dimes (2001). Spina biﬁ da. h� p://search.marchofdimes.com/msmres.
asp?query =folic+acid+and+women+with+spina+biﬁ da. Accessed April 15, 2005.
McFarlane, J., Hughes, R. B., Nosek, M. A., Grof, JY., Swedlend, N. & Dolan Mullen, P. (2001). Abuse assessment screen-disability (AAS-D): measuring frequency, type, and perpetrator of abuse toward women with physical disabilities. Journal of Women's Health & Gender-Based Medicine. 10(9):861-6. MedlinePlus (2001). Lidocaine (Topical). National Library of Medicine. www.nlm.nih.
gov/medlineplus/druginfo/uspdi/500058.html. Accessed September 1, 2005. MedlinePlus (2005). Ibandronate (Systemic). National Library of Medicine. www.nlm.
nih.gov/medlineplus/druginfo/uspdi/500499.html Accessed September 1, 2005 Morrow, M. (2002). Challenges of change: midlife, menopause and disability. The Ca- nadian Women's Health Network. www.cwhn.ca/resources/aﬁ /disability.html Accessed Multiple Sclerosis Council for Clinical Practice Guidelines (2001). Immunizations and multiple sclerosis. Evidence-based management strategies for immunizations in mul- tiple sclerosis. Washington, DC: Paralyzed Veterans of America. National Cancer Institute (2002). Radiation risks and pediatric computed tomography (CT): A guide to health care providers. www.cancer.gov/cancertopics/causes/radiation- risks-pediatric-CT/print. Accessed September 17, 2004.
National Institute of Child Health & Human Development (2004). Vaginitis. h� p:// National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) (2003). Uri- nary tract infections in adults. h� p://kidney.niddk.nih.gov/kudiseases/pubs/utiadult/in- National Institutes of Health Consensus Development Panel on Osteoporosis, Preven- tion, Diagnosis and Therapy. (2001). Osteoporosis prevention, diagnosis, and therapy. JAMA. 285: 785-795. National Institute on Alcohol Abuse and Alcoholism (2004). Helping patients with alcohol problems: A health practitioner's guide. www.niaaa.nih.gov/publication/practi- tioner/HelpingPatients.htm#step1b. Accessed October 28, 2004.
National Osteoporosis Foundation (2003). Physician's guide to prevention and treatment of osteoporosis. Washington, DC: National Osteoporosis Foundation. National Osteoporosis Foundation (2002). America's bone health: The state of osteopo- rosis and low bone mass in our nation. Accessed online on November 4, 2002 (www.nof.
org/advocacy/ prevlance/index.htm) National Vaginitis Association (2003). Prevention. www.vaginalinfections.com/pdas- nva/cons_prevention.html. Accessed November 20, 2004.
National Women's Health Information Center (2003). Menopause & hormone therapy. www.4women.gov/menopause/index2.htm. Accessed November 20, 2004 National Women's Health Information Center (2003). Women with disabilities: breast health access. www.4women.gov/wwd/wwd.cfm?page=36. Accessed November 20, National Women's Health Information Center (2003). Urinary tract infections. www.4women.gov/faq/uti.htm. Accessed November 20, 2004 National Women's Health Information Center (2004). Screening Tests and Immuniza- tions Guidelines for Women (Part 1 and 2). www.4women.gov/screeningcharts.htm. Accessed November 20, 2004 Nosek, M.A., Wuermser, L. & Walter, L.J. (1998). Diﬀ erences in contraceptive methods used by women with physical disabilities compared to women without disabilities. Pri- mary Care Update for Obstetricians & Gynecologists, 5(4), 172-173.
Nosek, M. A. (2000). Overcoming the odds: The health of women with physical disabili- ties in the United States. Archives of Physical Medicine and Rehabilitation. 81: 135-138.
Nosek, M. A., Howland, C. A., Rintala, D. H., Young, M. E. & Chanpong, G. F. (1997). National Study of Women with Physical Disabilities. Final Report. Houston: Center for Research on Women with Disabilities.
Nosek, M. A. & Howland, C. A. (1997). Breast and cervical cancer screening among women with physical disabilities. Archives of Physical Medicine and Rehabilitation. 78 (Suppl 5): S-39 – S 44.
Nosek M. A., Howland, C. A. & Young, M. E. (1997). Abuse of women with physical disabilities: Policy implications. Journal of Disability Studies. 8 (1-2), 157-176.
Nosek, M. A., Hughes, R. B., Swedlund, N. Taylor, H. B. & Swank, P. (2002). Self-esteem and women with disabilities. Social Science & Medicine. 56: 1737-1747.
Nosek, M. A., Hughes, R. B., Howland, C. A., Young, M. E., Mullen, P. D. & Shelton, M. L. (2004). The meaning of health for women with physical disabilities: a qualitative analysis. Family & Community Health. 27(1):6-21. Ode� e, F., Yoshida, K.K., Israel, P., Li, A., Ullman, D., Colontonio, A., Maclean, H. & Locker, D. (2003). Barriers to wellness activities for Canadian women with physical dis- abilities. Health Care for Women International, 24, 125-134.
Reid, I. R., Brown, J. P., Burckhardt, P., Horowitz, Z., Richardson, P., Trechsel, U. et al. (2002). Intravenous zoledronic acid in postmenopausal women with low bone mineral density. New England Journal of Medicine. 346(9):653-661 Rogers, J. & Matsumura, M. (2005). Mother-to-be: A guide to pregnancy and birth for women with disabilities. New York: Demos Publications.
Sandyk, R. (1995). Premenstrual exacerbation of symptoms in multiple sclerosis is at- tenuated by treatment with weak electromagnetic ﬁ elds. International Journal of Neu- roscience, 83(3-4), 187-198.
Schopp, L.H., Sanford, T.C., Hagglund, K.J., Gay, J.W. & Coatney, M.A. (2002). Remov- ing service barriers for women with physical disabilities: promoting accessibility in the gynecologic care se� ing. Journal of Midwifery & Women's Health, 47(2), 74-79.
Scho� enfeld, D. & Beebe-Dimmer, J.L. (2004). Advances in cancer epidemiology: un- derstanding causal mechanisms and the evidence for implementing interventions. An- nual Review of Public Health, Oct. 25, 2004 (Epub ahead of print).
Shabas, D., & Weinreb, H. (2000). Preventive health care in women with multiple sclero- sis. Journal of Women's Health and Gender-Based Medicine. 2000, 9(4): 389–395.
Sharts-Hopko, N.C., & Sullivan, M. (2002) Beliefs, perceptions and practices related to osteoporosis risk reduction among women with multiple sclerosis. Research in Nursing and Health. 27(6): 232-236.
Sharts-Hopko, N. & Sullivan, M. (2003). Obesity as a confounding health factor among women with mobility impairment. Journal of the American Academy of Nurse Practi- tioners. 15(10):438-443. Shootman, M. & Jeﬀ e, D.B.(2003). Identifying factors associated with disability-related diﬀ erences in breast cancer screening (United States). Cancer Causes Control, 14(2), 97- Sipski, M. & Alexander, C. (1997). Sexual function in people with disability and chronic illness. A Health professional's guide. Gaithersburg, MD: Aspen Smeltzer, S. C., Zimmerman, V., Caprio� i, T. & Fernandes, L. (2002). Osteoporosis risk factors and bone mineral density in women with multiple sclerosis. International Journal of MS Care. 4(1): 17-23, 29.
Smeltzer, S. C., Zimmerman, V., & Caprio� i, T. (2005). Osteoporosis risk and low bone mineral density in women with disabilities. Archives of Physical Medicine and Rehabili- Smeltzer, S. C., & Zimmerman, V. (2005). Health promotion interests of women with dis- abilities. Journal of Neuroscience Nursing. 37(2), 80-86.
Smeltzer, S.C. (2002). Reproductive decision making in women with multiple sclerosis. Journal of Neuroscience Nursing. 34(3): 145-157.
Sobsey, D. & Doe, T. (1991) Pa� erns of sexual abuse and assault. Sexuality and Disabil- ity. 9(3): 243-259.
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The Surgeon General's Call to Action to Improve the Health and Wellness of Persons Thierry, J. M. (2000). Increasing breast and cervical cancer screening among women with disabilities. Observations from the CDC. Journal of Women's Health & Gender-Based Medicine. 9(1):12.
U.S. Department of Health and Human Services (2000). Healthy People 2010. U.S. Department of Health and Human Services. Washington, D.C. U.S. Department of Health and Human Services (2004). Bone Health and Osteoporosis: A report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services. Washington, D.C. U.S. Department of Health and Human Services. (2004). Bone Health and Osteoporosis: A report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services. Washington, D.C. Veltman, A., Stewart, D.E., Tardif, G.S. & Branigan, M. (2001). Perceptions of primary health care services among people with physical disabilities. Part 1: Access issues. Medscape General Medicine, 3(2). www.medscape.com/viewarticle/408122 Vandenakker, C. B. & Glass, D. D. (2001). Menopause and aging with disability. Physical Medicine and Rehabilitation Clinics of North America. 12(1): 133-151.
Weil, E., Wachterman, M., McCarthy, E. P., Cavis, R. B., O'Day, B., Iezzoni, L. I. et al. (2002). Obesity among adults with disabling conditions. Journal of the American Medi- cal Association, 288(10), 1265-1268.
Welner, S. (1999). A provider's guide for the care of women with physical disabilities & chronic medical conditions. North Carolina Oﬃ ce on Disability & Health. Chapel Hill, Welner, S. L., Simon, J. A., Welner, B. (2002). Maximizing health in menopausal women with disabilities. Menopause: The Journal of the American Menopause Society, 9(3), Weppner, D. M. & Brownscheidle, C. M. (1995). The evaluation of the health care needs of women with disabilities. Primary Care Update for Obstetricians & Gynecologists, APPENDIX A
(This abbreviated list of organizations is oﬀ ered as a service only.) General Women's Health
American College of Obstetricians and Gynecologists - h� p://www.acog.com FDA Oﬃ ce of Women's Health - h� p://www.fda.gov/womens National Center for Complementary and Alternative Medicine - h� p://nccam.nih.gov National Women's Health Information Center - h� p:// www.4women.gov Women with Disability and Health Breast Health Access for Women with Disabilities (BHAWD) – h� p://bhawd.org Center on Research for Women with Disabilities (CROWD) - h� p://www.bcm.tmc.edu/ Disabled Woman's Network (DAWN) Ontario - h� p://dawn.thot.net/index.html Health Promotion for Women with Disabilities - Mammacare - h� p://www.mammacare.com/ North Carolina Oﬃ ce on Disability and Health – h� p://www.fpg.unc.edu/ ncodh SafePlace - h� p://www.austin-safeplace.org/ Through the Looking Glass - h� p://lookingglass.org/index.php Disability-Speciﬁ c
Arthritis Foundation - h� p://www.arthritis.org American Foundation for the Blind - h� p://www.a� .org/ Brain Injury Society - h� p://www.bisociety.org Epilepsy Foundation - h� p://www.epilepsyfoundation.org Lupus Foundation of America - h� p://www.lupus.org Myasthenia Gravis Foundation of America - h� p://www.myastenia.org National Institute of Health Consensus Conference on Osteoporosis - March, 2000 National Institutes of Health, Osteoporosis and Related Bone Diseases - National Re- source Center - h� p://www.osteo.org/osteo.html National Multiple Sclerosis Society - h� p://www.nmss.org National Osteoporosis Foundation - h� p://www.nof.org National Spinal Cord Injury Association - h� p://www.spinalcord.org Parents with Disabilities online - h� p://www.disabledparents.net/adaptive.html Post-Polio Health International - h� p://www.post-polio.org Spina Biﬁ da Association of America - h� p://www.sbaa.org The Sjogren's Syndrome Foundation - h� p://www.sjogrens.org UCP National (a.k.a. United Cerebral Palsy) - h� p://www.ucp.org APPENDIX A
(We do not formally recommend or endorse the equipment or products listed.) Accessible Exam Tables Accessible Examination Tables in Physicians' Oﬃ ces - The Importance of Accessible Examination Tables - Hausmann Industries, Inc. – h� p://www.hausmann.com Chatanooga Group - h� p://www.cha� group.com/ Keitzer Manufacturing USA - h� p://www.keitzer.com/ Hill Laboratories – h� p://www.hilllabs.com Wheelchair Scales Medical Wheelchair Scales from Seca, Detecto and Tanita- Assistive Listening Devices Harris Communications - h� p://www.hearinglossweb.com/res/gen/harris.htm United TTY Sales and Service (UTSS) - Sound Clarity, Inc.- h� p://www.soundclarity.com Pure Direct Sound - h� p://www.puredirectsound.com Enabling Romance: A Guide to Love, Sex and Relationships for People with Disabilities (and the People who Care About Them). Kroll, K. and Klein, E.L. Klein and Kroll, Inc., No Limits Communication, 1992 Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities. Rogers, J, Mat- sumura, M. Demos Publications, 386 Park Avenue South, New York, NY 10016, 1991. The Parenting Book for Persons with a Disability. Centre for Independent Living in Toronto (CILT), Inc. 205 Richmond Street West, Suite 605, Toronto, Ontario, M5V 1V3, 1999.
Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Kroto- sky D, Nosek MA, Turk MA (eds.) Brookes Publishing, 1996.
You May Be Able to Adopt! A Guide to the Adoption Option for Prospective Mothers with Disabilities and Their Partners. Barker, L.T. and Kirshbaum, M. Berkeley Planning Associ- ates, 440 Grand Avenue, Suite 500, Oakland, California 94610-5085, 1997 APPENDIX B
Interacting and Communicating with Women with Disabilities
Women with physical disabilities and chronic health conditions will feel most comfort- able receiving health care if you consider the following suggestions.
Do not be afraid to make a mistake when interacting and communicating with someone with a disability or chronic medical condition. Keep in mind that a person with a disability is a person ﬁ rst, and, like you, is entitled to the dignity, consideration, respect, and rights you expect for yourself.
Treat adults as adults. Address people with disabilities by their ﬁ rst names only when extending the same familiarity to all others present. Never patronize people by pa� ing them on the head or shoulder.
Relax. If you don't know what to do, allow the person who has a disability to identify how you may be of assistance and to put you at ease.
If you oﬀ er assistance and the person declines, do not insist. If your oﬀ er is ac cepted, ask how you can best help, and follow directions. Do not take over.
If someone with a disability is accompanied by another individual, address the person with a disability directly rather than speaking through the accompanying Be considerate of the extra time it might take for a person with a disability to get things done or said. Let the person set the pace.
Don't be embarrassed to use common expressions such as "See you later" or "Got to be running" that seem to relate to the person's disability.
People First Language
Place the person before the disability. Say "person with a disability" rather than "disabled person." Since "disability" and "disabled" have separate and diﬀ erent deﬁ nitions and meanings, the la� er usage is not only a violation of people ﬁ rst language-- it is also incorrect in most cases.
Avoid referring to people by the disability they have (for example, "an epileptic" or "blind people"). A person is not a condition. Rather, refer to "a person with epilepsy" or "people who are blind." People are not "bound" or "conﬁ ned" to wheelchairs. They use them to increase their mobility and enhance their freedom. As assistive technology provides increased mobility, it is preferred to say a "person who uses a wheelchair." When asked the question, "How long have you been in that chair?" a person who uses a wheelchair replied, "Since this morning." APPENDIX B cont.
Do not make assumptions about what a person can and cannot do. Do not push a person's wheelchair or grab the arm of someone walking with diﬃ culty without ﬁ rst asking if you can be of assistance and how you can as sist. Personal space includes a person's wheelchair, scooter, crutches, walker, cane, or other mobility aid.
Never move someone's wheelchair, scooter, crutches, walker, cane, or other mobility aid without permission.
When speaking to a person seated in a wheelchair for more than a few min utes, try to ﬁ nd a seat for yourself so the two of you are at eye level.
When giving directions to people with mobility limitations, consider distance, weather conditions, and physical obstacles such as stairs, curbs and steep hills.
It is appropriate to shake hands when introduced to a person with a disability. People with limited hand use or who wear an artiﬁ cial limb do shake hands.
Vision Loss (Low Vision and Blindness)
Identify yourself when you approach a person who has low vision or blind ness. If a new person approaches, introduce him or her.
It is appropriate to touch the person's arm lightly when you speak so that he or she knows to whom you are speaking before you begin.
Face the person and speak directly to him or her. Use a normal tone of voice.
Don't leave without saying you are leaving.
If you are oﬀ ering directions, be as speciﬁ c as possible, and point out obstacles in the path of travel. Use speciﬁ cs such as "Le� about twenty feet" or "right two yards." Use clock cues ("The door is at 10 o'clock.").
When you oﬀ er to assist someone with vision loss, allow the person to take your arm. This will help you to guide rather than propel or lead this person. When oﬀ ering seating, place the person's hand on the back or arm of the seat.
Alert people with low vision or blindness to posted information.
Never pet or otherwise distract a canine companion or service animal unless the owner has given you permission.
APPENDIX B cont.
Hearing Loss (Hard of Hearing, Deaf, Deaf-Blind)
Ask the person how he or she prefers to communicate.
If you are speaking through a sign-language interpreter, remember that the in terpreter may lag a few words behind—especially if there are names or technical terms to be ﬁ ngerspelled—so pause occasionally to allow the interpreter time to translate completely and accurately.
Talk directly to the person who has hearing loss, not to the interpreter. However, although it may seem awkward to you, the person who has hearing loss will look at the interpreter and may not make eye contact with you during the conversa Before you start to speak, make sure you have the a� ention of the person you are addressing. A wave, a light touch on the arm or shoulder, or other visual or tactile signals are appropriate ways of ge� ing the person's a� ention.
Speak in a clear, expressive manner. Do not over-enunciate or exaggerate words. Unless you are speciﬁ cally requested to do so, do not raise your voice. Speak in a normal tone; do not shout. To facilitate lip reading, face the person and keep your hands and other objects away from your mouth. Maintain eye contact. Don't turn your back or walk around while talking. If you look away, the person might assume the conversation is over.
While you are writing a message for someone with hearing loss, don't talk, since the person cannot read your note and your lips at the same time.
Try to eliminate background noise.
Encourage feedback to assess clear understanding.
If you do not understand something that is said, ask the person to repeat it or to write it down. The goal is communication; do not pretend to understand if you do not.
If you know any sign language, try using it. It may help you communicate, and it will at least demonstrate your interest in communicating and your willingness Speech Disabilities or Speech Diﬃ culties
Talk to people with speech disabilities as you would talk to anyone else.
Be friendly; start up a conversation.
Be patient; it may take the person a while to answer. Allow extra time for com munication. Do not speak for the person.
Give the person your undivided a� ention.
APPENDIX B cont.
Ask the person for help in communicating with him or her. If the person uses a communication device such as a manual or electronic communication board, ask the person how best to use it.
Speak in your regular tone of voice.
Tell the person if you do not understand what he or she is trying to say. Ask the person to repeat the message, spell it, tell you in a diﬀ erent way, or write it down. Use hand gestures and notes.
Repeat what you understand. The person's reactions will clue you in and guide you to understanding.
To obtain information quickly, ask short questions that require brief answers or a head nod. However, try not to insult the person's intelligence with Keep your manner encouraging rather than correcting.
Treat adults with intellectual disabilities as adults.
When speaking to someone who has an intellectual disability, try to be alert to his or her responses so that you can adjust your method of communication if nec essary. For example, some people may beneﬁ t from simple, direct sentences or from supplementary visual forms of communication, such as gestures, diagrams, or demonstrations.
Use language that is concrete rather than abstract. Be speciﬁ c, without being too simplistic. When possible, use words that relate to things you both can see. Avoid using directional terms like right-le� or east-west.
Be prepared to give the person the same information more than once in diﬀ erent When asking questions, phrase them to elicit accurate information. People with intellectual disabilities may be eager to please and may tell you what they think you want to hear. Verify responses by repeating a question in a diﬀ erent way.
Give exact instructions. For example, "Be back for lab work at 4:30," not "Be back in 15 minutes." Too many directions at one time may be confusing.
Depending on the disability, the person may prefer information provided in writ ten or verbal form. Ask the person how you can best relay the information.
Using humor is ﬁ ne, but do not interpret a lack of response as rudeness. Some people may not grasp the meaning of sarcasm or other subtleties of language.
People with brain injuries may have short-term memory deﬁ cits and may repeat themselves or require information to be repeated.
People with auditory perceptual problems may need to have directions repeated, and may take notes to help them remember directions or the sequence of tasks. They may beneﬁ t from watching a task demonstrated.
APPENDIX B cont.
People with perceptual or "sensory overload" problems may become disoriented or confused if there is too much to absorb at once. Provide information gradually and clearly. Reduce background noise if possible.
Repeat information using diﬀ erent wording or a diﬀ erent communication approach if necessary. Allow time for the information to be fully understood.
Don't pretend to understand if you do not. Ask the person to repeat what was said. Be patient, ﬂ exible, and supportive.
Some people who have an intellectual disability may be easily distracted. Try not to interpret distraction as rudeness.
Do not expect all people to be able to read well. Some people may not read at all.
Speak directly to the person. Use clear, simple communication.
Oﬀ er to shake hands when introduced. Use the same good manners in interact ing with a person who has a psychiatric disability that you would anyone else.
Make eye contact and be aware of your own body language. Like others, persons with psychiatric disabilities will sense your discomfort.
Listen a� entively and wait for them to ﬁ nish speaking. If needed, clarify what they have said. Never pretend to understand.
Treat adults as adults. Do not patronize, condescend, or threaten. Do not make decisions for the person, or assume their preferences.
Do not give unsolicited advice or assistance. Do not panic or summon an ambulance or the police if a person appears to be experiencing a mental health crisis. Calmly ask the person how you can help.
Do not blame the person. A person with a psychiatric disability has a complex, bio-medical condition that is sometimes diﬃ cult to control. They cannot just ‘shape up'. It is rude, insensitive, and ineﬀ ective to tell, or expect, a person Question the accuracy of media stereotypes of psychiatric disabilities. The movies and media sensationalize psychiatric disabilities. Most people never experience symptoms that include violent behavior. Relax. Be yourself. Do not be embarrassed if you happen to use common expres sions that seem to relate to a psychiatric disability.
See the Person. Beneath all the symptoms and behaviors of psychiatric disabili ties is a person who has many of the same wants, needs, dreams, and desires as anyone else. If you are afraid, learn more about psychiatric disabilities. Please note: This material is adapted and based in part on Achieving Physical and Communication Acces-sibility, a publication of the National Center for Access Unlimited, and Community Access Facts, an Adap-tive Environments Center publication and The Ten Commandments of Interacting with People with Mental Health Disabilities, a publication of The Ability Center of Greater Toledo. Ten behaviors related to good health Get 7-8 hours of sleep per night Maintain weight within recommended limits for height Get regular exercise Consume li� le or no alcohol (1-2 drinks per day) Eat breakfast daily Avoid between-meal snacks Being married is associated with improved health and longevity Maintain contacts with friends and relatives with whom one feels emotionally close Belong to a community group, e.g. a faith-based organization or service club (Adapted from Berkman, L. & Breslow, L. Health and ways of living: The Alameda County study. New York: Oxford University Press, 1983.) (TABLE 2: Recommended Adult Immunization Schedule by Vaccine and Age Group) unization Practices (ACIP),
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Report 800-822-7967, Information Court Other NCODH Publications Removing Barriers to Health Care: A Guide for Health Professionals
A booklet, developed by NCODH and the Center for Universal Design at N.C. State University, that walks the health care provider through the pro- cess of making a medical facility physically accessible. It is complete with speciﬁ c ADA requirements, picture illustrations, and some helpful tips on creating accessible environments and services.
Tips and Strategies to Promote Accessible Communication
This booklet is an easy-to-read, quick reference guide that addresses the basics on ways to eﬀ ectively communicate and interact with people with dis- abilities. Provides information and tips that can be incorporated in the work- place as well as in daily community living. Partners in Health Care:
People with Disabilities & Their Health Care Providers
A brochure ﬁ lled with tips for health care providers in promoting the health of people with cognitive and physical disabilities. Suggestions are given for people with disabilities on ways to help build positive partnerships with their medical care providers.
A special issue health and wellness magazine for women with disabilities that focuses on achieving wellness, not removing disability. Articles in Or- chid include topics such as relationships, recreation and leisure, travel, and gardening. Orchid also oﬀ ers an abundance of resource listings.
Randomized Locality Sensitive Vocabularies for Bag-of-Features Model? Yadong Mu1, Ju Sun1,2, Tony X. Han3, Loong-Fah Cheong1,2, Shuicheng Yan1 1Electrical and Computer Engineering, National University of Singapore, Singapore 2Interactive & Digital Media Institute, National University of Singapore, Singapore 3Electrical and Computer Engineering, University of Missouri-Columbia, USA