Women with Disabilities as aHealth Disparities Population     Margaret A. Nosek, PhD                   Executive Director ...
Topics• Definitions of health, disability, and  health disparities• Why women with disabilities constitute  a health dispa...
Definitions• What is a disabling condition?
Definitions• Health  – a dynamic (added in 1998) state of    complete physical, mental, social well    being, and not mere...
Definitions• Disability – a significant functional limitation  in one or more major life activity• Examples of major life ...
Definitions• Health in the Context of Disability  – Through disability management, the    effect of impairments can be min...
Continuum of Living with           Disability                Sudden onset disabilities                                    ...
Continuum of Living with           Disability               Gradual onset disabilitiesSymptoms           Diagnosis        ...
Definitions• What is a health disparity?
Definitions• Health disparity:  – Significant inequality in overall rate of    disease, prevalence, morbidity, and    mort...
Current and UpcomingCharacteristics of the Populationof Women with Disabilities
U.S. Women (132 million)      2000 U.S. Census                 24%-25% have disabilities       19%               5%       ...
B       ac          k              or                 sp A                   in rt                                        ...
Disability in Women by Age50%45%                     43%40%35%30%25%20%                18%15%10% 5%     4% 0%      5-15   ...
Children• Improved survival rate of low  birth weight newborns• Higher rates of children with  activity limitation and  pe...
Young Adult and Middle-Age• Environmental  hazards (cancer)• High-risk behaviors  (spinal cord injury,  brain injury)• War...
Older Women• Increasing both in number and percentage               Percentage By Age Group                      2000-2050...
Older Women• Significantly more disadvantage on every  demographic characteristic:  –   Single  –   Unemployment  –   Pove...
Status of Women with Disabilities• Women are disadvantaged by disability as  much as or more than by race/ethnicity  – Dis...
Why Women with DisabilitiesConstitute a Health Disparities        Population…
…and why nobodyacknowledges that
Which comes first –        Disability or Disparity?• Is disability a result of disparities?                       or• Is d...
Majority of literature examines  disability as a consequence of           disparity factors                               ...
People with disabilities constitute an unrecognized  minority POPULATION thatfaces many health disparitiesWhat are disabil...
Disability-related Health Disparity #1Prevalence of Common Health         Conditions:  The Problem of Secondary         Co...
Secondary Conditions• Medical, physical, cognitive,  emotional, or psychosocial  complications of a primary disabling  con...
Secondary Conditions• Significant interference with daily activities,  levels of functioning, quality of life;  premature ...
Health Disparities Faced by Women with Physical Disabilities• 8 times more likely to have osteoporosis• 6 times more likel...
Obesity             Behavior change         Reduce physical activity           Less food shopping                 Outcomes...
Disability-related Health Disparity #2  Lack of Health Insurance
Health Care Insurance    Individuals                           Taxpayers Private          60%                        Medic...
Lack of Appropriate Health           Care Insurance• Reasons for being uninsured  –   Pre-existing conditions  –   Unemplo...
Uninsured• A growing number of women are:  – too disabled to work full time  – not disabled enough to qualify for benefits...
Disability-related Health Disparity #3    Access to Health Care
Health Care Disparities Faced byWomen with Physical Disabilities• 7 times more likely to be unable to access  care• 4 time...
Access problems• Architectural barriers• Equipment barriers• Policy barriers• Attitudinal barriers• Provider lack of knowl...
Americans Disabilities Act US Department of Justice Access to Medical Care for People with  Mobility Disabilities         ...
Removing Barriers• Implement the accessibility and equal opportunity  provisions of the Americans with Disabilities Act   ...
Consequences of               Barriers To Care• Inappropriate use of specialists for primary care• Transition problems fro...
Disability-related Health Disparity #4Access to Preventive Health         Services
Health Promotion Programs• Need accessible exercise and  recreation facilities• Need disability-related information for  a...
Cancer Screening• Physicians should refer for cancer screening• Significant disparities in rates of cervical and  breast c...
Disability-related Health Disparity #5Treatment in Healthcare Settings                [Clueless!]
Refusal to Treat• Reported by 31% of women with physical  disabilities in one study• Expectation that rehabilitation cente...
Unfounded and Damaging          Assumptions• Women with disabilities have no interest in  sex and are not sexually active ...
Disability-related Health Disparity #6Access to Health Information
Need Disability-related       Information on…• Osteoporosis prevention and  management• Heart disease prevention• Diabetes...
Medical Education• Include wellness in the context of disability in  the regular curriculum• Acknowledge disability as a c...
5 Pathways to Change
1. National Health Insurance• Bipartisan issue• One solution for the depressed  economy• Congress needs a groundswell of  ...
2. People with Disabilities• Teach self-advocacy skills• Expand programs to enhance  physical, psychological, and social  ...
3. Americans with Disabilities Act • Get familiar with its specifications for   equal access • Understand the various mean...
4. Health Care Providers,  Researchers, and Educators• Stay informed on disability-related health  disparities• Advocate f...
5. The Media• Create a public interest in the serious  inequities and gaps in health care for  people with disabilities, e...
Resources• Center for Research on Women with  Disabilities, www.bcm.edu/crowd• Center for Disability Issues and the  Healt...
Center for Research on Women with Disabilities      Department of Physical Medicine and Rehabilitation                 Bay...
Questions?      • Questions welcome by email:        crowd@BCM.edu
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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:
• 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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Nosek, women with disabilities and health disparities, for medical students, march 2011

  1. 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. 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. 3. Definitions• What is a disabling condition?
  4. 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. 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. 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. 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. 8. Continuum of Living with Disability Gradual onset disabilitiesSymptoms Diagnosis Treatment Outpatient therapies Continually Adaptation changing normal Medical model Social model
  9. 9. Definitions• What is a health disparity?
  10. 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. 11. Current and UpcomingCharacteristics of the Populationof Women with Disabilities
  12. 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. 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. 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. 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. 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. 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. 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. 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. 20. Why Women with DisabilitiesConstitute a Health Disparities Population…
  21. 21. …and why nobodyacknowledges that
  22. 22. Which comes first – Disability or Disparity?• Is disability a result of disparities? or• Is disability a cause of disparities?
  23. 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. 24. People with disabilities constitute an unrecognized minority POPULATION thatfaces many health disparitiesWhat are disability-related health disparities?
  25. 25. Disability-related Health Disparity #1Prevalence of Common Health Conditions: The Problem of Secondary Conditions
  26. 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. 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. 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. 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. 30. Disability-related Health Disparity #2 Lack of Health Insurance
  31. 31. Health Care Insurance Individuals Taxpayers Private 60% Medicare, MedicaidEmployers Public employees, tax subsidies
  32. 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. 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. 34. Disability-related Health Disparity #3 Access to Health Care
  35. 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. 36. Access problems• Architectural barriers• Equipment barriers• Policy barriers• Attitudinal barriers• Provider lack of knowledge
  37. 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:http://www.ada.gov/2010AD Astandards_index.htm
  38. 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. 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. 40. Disability-related Health Disparity #4Access to Preventive Health Services
  41. 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. 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. 43. Disability-related Health Disparity #5Treatment in Healthcare Settings [Clueless!]
  44. 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. 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. 46. Disability-related Health Disparity #6Access to Health Information
  47. 47. Need Disability-related Information on…• Osteoporosis prevention and management• Heart disease prevention• Diabetes prevention• Weight control• Cancer treatment• Menopause
  48. 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. 49. 5 Pathways to Change
  50. 50. 1. National Health Insurance• Bipartisan issue• One solution for the depressed economy• Congress needs a groundswell of support• Be informed – www.HealthCareForAllTexas.org – www.Healthcare-NOW.org – www.PNHP.org
  51. 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. 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. 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. 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. 55. Resources• Center for Research on Women with Disabilities, www.bcm.edu/crowd• Center for Disability Issues and the Health Professions, http://www.cdihp.org/about.html• DBTAC Southwest ADA Center, http://www.dlrp.org/, 1-800-949-4ADA
  56. 56. Center for Research on Women with Disabilities Department of Physical Medicine and Rehabilitation Baylor College of Medicine Phone: 713-661-4678 mnosek@bcm.edu www.bcm.edu/crowd
  57. 57. Questions? • Questions welcome by email: crowd@BCM.edu

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