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Office on Disability

National Leadership Summit on Eliminating and Ethnic Disparities in Health: Pre-Conference Addressing the Healthcare and Wellness Needs of Women of Color with Disabilities, January 2006

Conference Presentation: Optimal Healthcare for Women of Color with Disabilities
by Jaye E. Hefner, MD

Slide 1

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

Slide 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

Slide 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

Slide 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

Slide 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.

Source: (Bradsher, 1996)

Slide 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)

Slide 7

The Triple Oppression? Disability, Race and Gender

Slide 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

Slide 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

Slide 10

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

Slide 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.

Slide 12

And It Gets Worse?

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

Slide 13

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

Slide 14

The Triple Oppression? Disability, Race and Gender

Slide 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.

Slide 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

Slide 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

Slide 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

Source: Iezzoni, 2000

Slide 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

Slide 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

Slide 21

What can be done?

Slide 22

Access barriers constitute the majority of the limitation to primary healthcare services

These include:

  • Unmet transportation needs
  • Lack of provider knowledge regarding disabilities
  • Refusal/inability to give medical treatment
  • Architectural barriers and negative attitudes of providers

Slide 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)

Slide 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?

Slide 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.

Slide 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

Slide 27

Welner Exam Table

  • Lowest level from floor 19 inches
  • Hydraulic removable stirrups

Slide 28

Mammography

  • For those unable to stand

Slide 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

Slide 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