Women, Disability, and Health Care Reform

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Women, Disability, and Health Care Reform

• Margaret A. Nosek, PhDExecutive DirectorCenter
  for Research on Women with DisabilitiesProfessor
  Department of Physical Medicine and
  RehabilitationBaylor College of Medicine

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Topics

• Why women with disabilities constitute a health
  disparities populationand why nobody
  acknowledges that
• Current and upcoming characteristics of the
  population of women with disabilities
• Disability-related health disparities
• Training women with disabilities to be advocates
  for health care reform

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Background

• Health-care reform debate is escalating in volume
  and importance as the presidential elections of
  2008 approach.
• The voice of women with disabilities in this
  debate is particularly important but has not been
  heard to date.
• Evidence that this rapidly growing population
  experiences significant health and healthcare
  disparities.
• By incorporating requirements in health care
  reform that address their needs, the needs of the
  rest of the United States population will also be
  met.

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Robert Wood Johnson Foundation

• Awarded 12 grants through its Community Catalyst
  program to promote grassroots organizing around
  this issue at the state level
• Each was asked if they are currently receiving
  input about the intersection of women's issues
  and disability issues in health care reform
• Four responded--they had not heard specifically
  about health care and women with disabilities
• This omission has two causes
• organizations involved in health care reform are
  not aware of the critically important concerns of
  women with disabilities
• there is no organized cadre of women with
  disabilities trained as advocates for health care
  reform

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Why Women with Disabilities Constitute a Health
Disparities Population
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Majority of literature examines disability as a
consequence of disparity factors
Disability is only mentioned in terms of its
detection, diagnosis, prevention, treatment, or
efforts to delay its onset or progression as it
contributes to health disparities
income
location
sexual orientation
gender
education
race
ethnicity
income
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What are disability-related health disparities?
People with disabilities constitute an
unrecognized minority population that faces
many health disparities
Prevalence of common health conditions Access to
health care Access to preventive health
services Treatment in health care settings
Access to health information Inclusion in
health-related research
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Current and Upcoming Characteristics of the
Population of Women with Disabilities
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U.S. Women (132 million)2000 U.S. Census
24-25 have disabilities
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Disabling Conditions in Women
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Disability in Women by Age
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Status of Women with Disabilities

• 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
• Many are too disabled to work but not disabled
  enough to obtain benefits

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Disability-related Health Disparity 1
Prevalence of Common Health Conditions
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Health Disparities Faced by Women with Physical
Disabilities

• 6 times more likely to have depression
• 5 times more likely to have diabetes
• 5 times more likely to have osteoporosis
• more than twice as likely to be obese
• almost 2 times more likely to have high blood
  pressure

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Disability-related Health Disparity 2Access to
Health Care
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Health Care Disparities Faced by Women 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

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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 physicians 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

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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

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Disability-related Health Disparity 3 Access to
Preventive Health Services
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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

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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 dont refer
• Diagnosis at later stages of cancer

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Disability-related Health Disparity 4 Treatment
in Healthcare Settings
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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

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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 cant feel anyway, so
• _______(fill in the blank osteoporosis,
  depression) is to be expected and there is
  nothing you can do about it
• She doesnt walk anyway, so
• Medicaid wouldnt pay for it anyway

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Proposed Training Program to Prepare Women with
Disabilities as Advocates for Health Care Reform
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Design of the Proposed Training Program

• Internet-based
• 4 webinars
• Train women in each of the 12 RWJF grantee states
• Website and listserv
• Follow-up technical assistance
• Training content

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Women with disabilities as a health disparity
population

• Disadvantage in obtaining health care coverage
• Disparities in access to health care
• Disparities in quality of health care
• Deficits in knowledge of healthcare providers
• Healthcare in support of wellness in the context
  of disability

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Health Care Reform State-of-the-Art

• Local level
• State level
• National level
• Work with NWLC, Physicians for National Health
  Care, National Womens Health Network, other
  project advisors

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Advocacy Strategies

• Stay informed
• Need for internet-based information resources
• Listserv
• Keep up to date on what is happening in your
  state
• Demand your place at the table
• Demand answers
• Organize
• Educate
• Use the power of the peer
• Use the media

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Center for Research on Women with
DisabilitiesDepartment of Physical Medicine and
RehabilitationBaylor College of Medicine1475
West Gray, Suite 165 Houston, TX 77019 Phone/Fax
713-523-0909 or 713-661-4678mnosek_at_bcm.eduwww.bc
m.edu/crowd