Optimal Healthcare for Women of Color with Disabilities Jaye E. Hefner, MD

1. Optimal Healthcare for Womenof Color with DisabilitiesJaye E. Hefner, MD SGIM 26th Annual Meeting Vancouver, British Columbia April 30-May 3, 2003 Generalist Physicians as Agents for Change: Education and Research Practice and Policy Workshop WF04 Disparities in Health and Addressing the Healthcare Needs of Specific Populations Saturday 11:00 am � 12:30 pmSGIM 26th Annual Meeting Vancouver, British Columbia April 30-May 3, 2003 Generalist Physicians as Agents for Change: Education and Research Practice and Policy Workshop WF04 Disparities in Health and Addressing the Healthcare Needs of Specific Populations Saturday 11:00 am � 12:30 pm

2. Healthcare for Women with Physical Disabilities Recognize the need for healthcare NOT disability care Few special primary care needs Improve access and eliminate barriers to primary care Physical exam issues, transfers, etc.

3. Learning Objectives To describe the barriers and disparities in healthcare that women of color with disabilities face in accessing primary care To identify the availability of healthcare services among women of color with disabilities To discuss interventions for providers to reduce healthcare disparities in their own practice

4. Scope of the Problem Common: 19.6% of females > age 5 report some type of disability (2000 U.S. Census) 30 million women in the US (NIDRR 1999) 16 million over the age of 50 Rates increase with age Exact numbers depend on definition One minority group anyone can join in a flash

5. African Americans have the highest disability rates for those ages 15-54 and for those older than 65. Hispanics have the highest rates of disability among 55-64.

6. Routine Screening Persons with major mobility problems: 70% less likely: asked about contraception (women) 40% less likely: Pap smear 30% less likely: mammogram 20% less likely: asked about smoking history (analyzing smokers only)

7. The Triple Oppression?Disability, Race and Gender

8. Discrimination on the Basis of Disability Linked to racial, class and gender dissonance Research has indicated that the consequences of disablement are particularly serious for women

9. Discrimination Traditionally, women with disabilities are discriminated against on more than one ground: race, gender and disability, and often they have less access to essential services such as health care, education and vocational rehabilitation

10. Did we really learn everything we needed to know in kindergarten?

11. Mainstreaming of 5.8 million children with disabilities, notwithstanding, disabilities are still not adequately presented in the two most popular children's magazines : Highlights for Children and Sesame Street Magazine. From 1961 to 1990 only sixty-three disability articles were published during a thirty year period of time.

12. Only five out of sixty-two disability stories featured an African-American character. Asian and Hispanic characters were not represented at all.

13. Twenty-five narratives featured a male character. Eighteen depicted a female character. Nineteen were either mixed, or non-gender specific.

14. The Triple Oppression?Disability, Race and Gender

15. What is the cultural competence? Cultural competence is the understanding of those values, beliefs, and needs that are associated with patients� age, gender, racial, ethnic, and/or religious background However, the culture of disability has been excluded.

16. Defining Disability No single consensus definition International Classification of Functioning, Disability and Health: �disability� = �umbrella term� encompassing medical and social components Introduces concept of contribution of environment to disability Differing conceptions of disability can fundamentally affect patient-clinician communication

17. Perceptions of Disability 1994-1995 NHIS-D self-respondents �Perceives self as NOT having a disability� 58 % of blind, very low vision 73 % of deaf, very hard of hearing 32 % of walker users 20 % of manual wheelchair users 16 % of power wheelchair users

18. Perceptions of Disability Women, racial minorities, and Hispanic respondents are much less likely to say they are disabled than men and white and non-Hispanic respondents Low income persons are much more likely to perceive disability than those with high incomes

19. Perceptions of Disability Complex cultural factors may explain these differences If you are disenfranchised because of membership in one minority group, you may be unwilling to identify with yet another group perceived as excluded There may be a lack of respect associated with having a disability identity

20. Why include disability in cultural competency? It is essential for effective communication and understanding of needs and values Recognize there are no hierarchies in culture People hold many simultaneous cultural associations, and each have implications for the care process

21. What can be done?

22. These include: Unmet transportation needs Lack of provider knowledge regarding disabilities Refusal/inability to give medical treatment Architectural barriers and negative attitudes of providers

23. Improve Doctor-Patient Communication Culturally competent communication includes all of the cultures that your patient is a member of (whether or not they self-identify with that culture or not)

24. Disability-Related Screening Has someone withheld something from you, such as medications or assistance devices? Has someone walked out of the room when you needed them, knowing you would be unable to transfer without assistance? Has someone prevented you from obtaining a job, finding a house?

25. What are secondary conditions? Those physical, medical, cognitive, emotional, or psychosocial consequences to which persons with disabilities are more susceptible by virtue of an underlying condition, including adverse outcomes in health, wellness, participation, and quality of life.

26. Examples include: Depression Hypertension Chronic pain Skin breakdown Undetected diseases Contractures Abuse Pulmonary complications Unwanted weight gain Excessive fatigue Social isolation Bowel and bladder complications Osteoporosis Infertility

27. Welner Exam Table

28. Mammography

29. Will I be able to pay my bills? Schedule appropriately and use Time-Based coding Billable time is time spent with the patient and or family for the purposes of determining a diagnosis or an appropriate treatment plan and the counseling is 50% or more of the total patient encounter. ALWAYS DOCUMENT TIME SPENT WITH THE PATIENT/FAMILY MEMBERS

30. Summary There are tremendous unmet needs in clinical care, medical education and training, and clinical research to close the gap and eliminate the health disparities that exist for women, women of color, women with disabilities, women of color with disabilities