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Nosek, women with disabilities and health disparities, for medical students, march 2011
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Nosek, women with disabilities and health disparities, for medical students, march 2011


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This presentation offers statistics and insights about the disparities in health and access to health care faced by the population of women with disabilities. Specific topics include: …

This presentation offers statistics and insights about the disparities in health and access to health care faced by the population of women with disabilities. Specific topics include:
• Definitions of health, disability, and health disparities
• Why women with disabilities constitute a health disparities population…and why nobody acknowledges that
• Current and emerging characteristics of the population of women with disabilities
• Disability-related health disparities
• Five pathways to change

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  • 1. Women with Disabilities as aHealth Disparities Population Margaret A. Nosek, PhD Executive Director Center for Research on Women with Disabilities Professor Department of Physical Medicine and Rehabilitation Baylor College of Medicine © 2010 by Baylor College of Medicine
  • 2. Topics• Definitions of health, disability, and health disparities• Why women with disabilities constitute a health disparities population…and why nobody acknowledges that• Current and emerging characteristics of the population of women with disabilities• Disability-related health disparities• Five pathways to change
  • 3. Definitions• What is a disabling condition?
  • 4. Definitions• Health – a dynamic (added in 1998) state of complete physical, mental, social well being, and not merely the absence of disease (WHO, 1946)• Wellness – a harmony or balance across multiple dimensions of living
  • 5. Definitions• Disability – a significant functional limitation in one or more major life activity• Examples of major life activities: – bathing – dressing – eating – walking – lifting – standing – reaching – grasping – understanding
  • 6. Definitions• Health in the Context of Disability – Through disability management, the effect of impairments can be minimized and compensated for so that balance is maintained with the other domains of health – This is often achieved by the positive use of effective medication, technology, psychological adaptation, and contextual support
  • 7. Continuum of Living with Disability Sudden onset disabilities Community Outpatient reintegration rehabilitation Inpatient rehabilitation Acute care The newEvent normal Medical model Social model
  • 8. Continuum of Living with Disability Gradual onset disabilitiesSymptoms Diagnosis Treatment Outpatient therapies Continually Adaptation changing normal Medical model Social model
  • 9. Definitions• What is a health disparity?
  • 10. Definitions• Health disparity: – Significant inequality in overall rate of disease, prevalence, morbidity, and mortality, or survival rates in any group as compared to the health status of the general population – Inequality in health access, diagnosis, treatment, and education of minority populations or other underserved members of the community
  • 11. Current and UpcomingCharacteristics of the Populationof Women with Disabilities
  • 12. U.S. Women (132 million) 2000 U.S. Census 24%-25% have disabilities 19% 5% Non-institutionalized 1% civilian women with disabilities over age 5 Women living in nursing homes Military women with disabilities Women without75% disabilities
  • 13. B ac k or sp A in rt 10% 15% 20% 25% 0% 5% e hr Lu pr it n ob is g He le M ,r a m es rt en pi Di s ta ra se l, as em tor y e o p tio ro S n b tif al . B pr lin fne ob dn s s Di .D es or abe ea fn s o de tes es r f s vi orm or sio i B h n ty ro ea p ke ri ro n n b g . bo p 2005 U.S. Census Bureau, SIPP ne ro /fr b ac . tu re Disabling Conditions in Women
  • 14. Disability in Women by Age50%45% 43%40%35%30%25%20% 18%15%10% 5% 4% 0% 5-15 16-64 65+ Age
  • 15. Children• Improved survival rate of low birth weight newborns• Higher rates of children with activity limitation and permanent disability• 20% of U.S. households have children with special healthcare needs• Born and raised with severe disability and sustained by advanced technology• Creating a whole new set of demands on families and healthcare systems
  • 16. Young Adult and Middle-Age• Environmental hazards (cancer)• High-risk behaviors (spinal cord injury, brain injury)• War (amputation, brain injury)• Onset of chronic conditions (arthritis, multiple sclerosis)
  • 17. Older Women• Increasing both in number and percentage Percentage By Age Group 2000-2050 22.6% 14.3% ≥ 85 65-84 45-64 2000 2010 2020 2030 2040 2050
  • 18. Older Women• Significantly more disadvantage on every demographic characteristic: – Single – Unemployment – Poverty – Housing – Nursing home• But more likely to have access to health care
  • 19. Status of Women with Disabilities• Women are disadvantaged by disability as much as or more than by race/ethnicity – Distribution by race/ethnicity reflects the general population, except for higher rates of disability among African American women in the 45-64 age group• Compared to women in general, women with physical disabilities are significantly more likely to: – Be single – Have less than a high school education – Be unemployed – Live in poverty – Have inadequate access to health care
  • 20. Why Women with DisabilitiesConstitute a Health Disparities Population…
  • 21. …and why nobodyacknowledges that
  • 22. Which comes first – Disability or Disparity?• Is disability a result of disparities? or• Is disability a cause of disparities?
  • 23. Majority of literature examines disability as a consequence of disparity factors Disability is only iin ncco loc mentioned in terms of its omm atio e detection, diagnosis, e n or sex prevention, treatment, r ie ua nde nt l at or efforts to delay its ge io n onset or progression as iteduca tion contributes to health e disparities rac rur ity ethnic al
  • 24. People with disabilities constitute an unrecognized minority POPULATION thatfaces many health disparitiesWhat are disability-related health disparities?
  • 25. Disability-related Health Disparity #1Prevalence of Common Health Conditions: The Problem of Secondary Conditions
  • 26. Secondary Conditions• Medical, physical, cognitive, emotional, or psychosocial complications of a primary disabling condition• May be the consequence of: – overuse, underuse, or misuse of an already weakened neuromuscular system – complications due to original injury, disease, or treatment received – poor coping and lifestyle behaviors
  • 27. Secondary Conditions• Significant interference with daily activities, levels of functioning, quality of life; premature mortality• Women with physical disabilities have an average of 14 secondary conditions• Worsens with age in terms of number, severity, and interference with life activities• Significantly increases health care costs
  • 28. Health Disparities Faced by Women with Physical Disabilities• 8 times more likely to have osteoporosis• 6 times more likely to have diabetes• 4 times more likely to have depression• almost 3 times more likely to have high blood pressure• more than twice as likely to be obese
  • 29. Obesity Behavior change Reduce physical activity Less food shopping Outcomes Less cooking Weight gain Eating out Eating prepared foods Disability Hypertension DiabetesMobility limitation Weakness Circulatory problems Pain Heart disease Fatigue Sleep problems
  • 30. Disability-related Health Disparity #2 Lack of Health Insurance
  • 31. Health Care Insurance Individuals Taxpayers Private 60% Medicare, MedicaidEmployers Public employees, tax subsidies
  • 32. Lack of Appropriate Health Care Insurance• Reasons for being uninsured – Pre-existing conditions – Unemployment – Under-employment – Age (18-30) (55-64) – Being single• Cost – Premiums – Deductibles – Co-pay• Coverage exclusions – Maternity care – Prevention – Medications – Rehabilitation – Durable medical equipment
  • 33. Uninsured• A growing number of women are: – too disabled to work full time – not disabled enough to qualify for benefits• …but still have to: – work – maintain their household – care for their children• …without: – a supportive spouse – day care – health insurance
  • 34. Disability-related Health Disparity #3 Access to Health Care
  • 35. Health Care Disparities Faced byWomen with Physical Disabilities• 7 times more likely to be unable to access care• 4 times more likely to have a specialist as their usual source of care• 3 times more likely to delay care due to cost• more likely to have difficulty obtaining: – mental health care – eyeglasses – dental care – prescriptions• less likely to have private insurance
  • 36. Access problems• Architectural barriers• Equipment barriers• Policy barriers• Attitudinal barriers• Provider lack of knowledge
  • 37. Americans Disabilities Act US Department of Justice Access to Medical Care for People with Mobility Disabilities July 2010 Enforced starting in March 2012 Downloadable at: Astandards_index.htm
  • 38. Removing Barriers• Implement the accessibility and equal opportunity provisions of the Americans with Disabilities Act – Equal access to services in the most integrated setting – Nondiscrimination• Ideal physician’s office: – Hallways and exam rooms able to accommodate people in wheelchairs – Adjustable height, extra wide, padded examination tables – Platform scale – Staff trained to assist with transfers and dressing – Written materials available in alternative formats
  • 39. Consequences of Barriers To Care• Inappropriate use of specialists for primary care• Transition problems from pediatric to adult care; comprehensive care difficult to obtain• Inappropriate use of emergency departments for preventable problems• Low rates of preventive cancer screenings• Failure to detect problems that may be obscured by disability – sexually transmitted infections, pelvic inflammatory disease – cervical cancer – ectopic pregnancy
  • 40. Disability-related Health Disparity #4Access to Preventive Health Services
  • 41. Health Promotion Programs• Need accessible exercise and recreation facilities• Need disability-related information for appropriate dietary recommendations• Need smoking cessation programs that are sensitive to disability issues• Physicians need to ask about sexual activity and health promoting behaviors
  • 42. Cancer Screening• Physicians should refer for cancer screening• Significant disparities in rates of cervical and breast cancer screening for women with physical disabilities• Single greatest barrier to pelvic exams is the lack of elevating exam tables• Greatest barriers to mammography: – Non-adaptable equipment – Radiologists uninformed, lack time – Physicians don’t refer• Diagnosis at later stages of cancer
  • 43. Disability-related Health Disparity #5Treatment in Healthcare Settings [Clueless!]
  • 44. Refusal to Treat• Reported by 31% of women with physical disabilities in one study• Expectation that rehabilitation centers can meet all needs• Expectation that everyone has access to rehabilitation• Violation of the Americans with Disabilities Act• Physicians unprepared to deal with wellness in the context of disability
  • 45. Unfounded and Damaging Assumptions• Women with disabilities have no interest in sex and are not sexually active – Push to hysterectomy – Failure to discuss birth control – Failure to check for sexually transmitted infections• She can’t feel anyway, so…• _______(fill in the blank: osteoporosis, depression) is to be expected and there is nothing you can do about it• She doesn’t walk anyway, so…• Medicaid wouldn’t pay for it anyway
  • 46. Disability-related Health Disparity #6Access to Health Information
  • 47. Need Disability-related Information on…• Osteoporosis prevention and management• Heart disease prevention• Diabetes prevention• Weight control• Cancer treatment• Menopause
  • 48. Medical Education• Include wellness in the context of disability in the regular curriculum• Acknowledge disability as a component of diversity and cultural competence• Someday there will be minimum competency requirements for the treatment of people with disabilities in primary, reproductive, and gerontological care.• Learn to do searches on disability topics; use the Links page on the CROWD website
  • 49. 5 Pathways to Change
  • 50. 1. National Health Insurance• Bipartisan issue• One solution for the depressed economy• Congress needs a groundswell of support• Be informed – – –
  • 51. 2. People with Disabilities• Teach self-advocacy skills• Expand programs to enhance physical, psychological, and social health• Connect with others• Support disability advocacy organizations
  • 52. 3. Americans with Disabilities Act • Get familiar with its specifications for equal access • Understand the various means for accommodating special needs • Promote compliance as a matter of setting priorities • Advocate for access wherever you see a barrier
  • 53. 4. Health Care Providers, Researchers, and Educators• Stay informed on disability-related health disparities• Advocate for increased federal and private funding for research on the health and wellness of people with disabilities• Include issues of concern to people with disabilities in all efforts toward health promotion, just as issues of concern to people of color are included• Health-oriented web sites should include information on the effect of disability on wellness
  • 54. 5. The Media• Create a public interest in the serious inequities and gaps in health care for people with disabilities, especially women• When new knowledge is generated, the media can help us disseminate it to both the people with disabilities and their physicians, thereby increasing the demand for excellence• Promote images of healthy and vibrant people with disabilities; the media can offer hope to people who have no role models
  • 55. Resources• Center for Research on Women with Disabilities,• Center for Disability Issues and the Health Professions,• DBTAC Southwest ADA Center,, 1-800-949-4ADA
  • 56. Center for Research on Women with Disabilities Department of Physical Medicine and Rehabilitation Baylor College of Medicine Phone: 713-661-4678
  • 57. Questions? • Questions welcome by email: