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Symposium: Executive Summary

CROWD logoImproving the Health and Wellness of Women with Disabilities

June 2003

Center for Research on Women with Disabilities
Baylor College of Medicine
Houston, TX

Funded by:
Centers for Disease Control and Prevention, Award Reference Number R13/CCR619638
Ethel Louise Armstrong Foundation
Houston Endowment Foundation

Symposium Table of Contents


The study of health and wellness in the context of disability for women is relatively new, coming to light after researchers realized that disability is not necessarily the opposite of health, nor is it necessarily a gender-neutral experience. Interest in research on documenting and removing health disparities for women with disabilities has followed a decade after the rise of interest in women's health, but now professionals and consumers are demanding much more. Researchers from across the country, clinicians, educators, representative disabled women, and policy makers from federal funding agencies worked together over a two-year period to discuss what is known and what needs to be known about these health disparities. They convened in Houston in June 2003 to develop research recommendations. This report summarizes their work.

Health Disparities among Women with Disabilities

There are 28 million women with disabilities in the U.S., constituting 21% of the population of women. Functional limitations affect women more severely as they age, increasing from 6% of women ages 18-44 to 40% of women age 65 or older. Women with more extensive functional limitations are significantly more likely than women with no limitations to live alone, be divorced, have less education, be unemployed, and live in poverty. In terms of health care needs, women with functional limitations, especially younger women, are more likely to delay getting care due to cost, and be unable to get care for general medical conditions or surgery, mental health needs, dental needs, prescription medicine, or eyeglasses. Many women with disabilities face compounded barriers to health care and are underserved or unserved due to racial or ethnic minority status, sexual orientation, disability type, rural residence, or economic disadvantage. Although hypertension, depression, stress, smoking, and being overweight are concerns for women in general, these problems are significantly greater among women with functional limitations. Nearly a third of women with extensive functional limitations rate their overall health as poor compared to less than 1% of women with no limitations. These dramatic statistics warrant expanded research and dissemination of findings on improving the health of women with disabilities.

Recommendations

[to be added after approval by the Centers for Disease Control and Prevention]

Conclusions

The population of women with disabilities is very likely to become one of the most important forces in the rapidly changing dynamics of U.S. society. It is a population that is growing at an accelerated rate across all age groups due to advances in neonatal through geriatric medicine. As more women survive disease, traumatic injury, and the consequences of war and environmental degradation, they will be resuming their social roles with functional limitations and will present even more complex medical needs to a health care system that is unprepared to handle them. This situation demands the attention of all sectors involved in creating a health care system for the twenty-first century. Increasing visibility of these issues and emerging collaborations among clinicians, health care educators, researchers, funding sources, feminist disability rights activists, and the media have the power to ensure a place at the planning table for women with disabilities.

The recommendations that have resulted from this project will serve as the seeds for new and expanded funding channels for research and training in a wide variety of disability- and health-related topics. We look forward to the day when collaborations and communications initiated through this symposium will result in print and web-based information that will be easily available to consumers, clinicians, researchers, and educators so they may be empowered to do all within their power to improve the health of women with disabilities.

Participants

Heather Becker, PhD
Research Scientist, College of Nursing
The University of Texas at Austin

Fran Chevarley, PhD
Senior Statistician
Agency for Healthcare Quality and Research

Julianna Cyril, MPH, PhD
Health Scientist, Disability and Health Division
Centers for Disease Control and Prevention

Pamela Dickens, MPH
North Carolina Office on Disability and Health
University of North Carolina - Chapel Hill

Loretta Finnegan, MD
Medical Advisor for the Director, Office of Research on Women's Health
National Institutes of Health

Catherine Froehlich-Grobe, PhD

Assistant Professor, Dept. Occupational Therapy
University of Kansas

Margaret Giannini, MD, FAAP

Director, Office on Disability
US Dept. of Health and Human Services

Linda Gonzales, MA
Disability Consultant and Director
Association of Programs for Rural Independent Living, Kent, OH

Tracie Harrison, MSN, RN, FNP
Doctoral Candidate, School of Nursing
The University of Texas at Austin

Jaye E. Hefner, MD
Medical Director, Magee Women's Hospital
Center for Women with Physical Disabilities

Lucy Wong Hernandez
National Technical Assistance Center
University of Hawaii

June Isaacson Kailes, MSW, LCSW
Disability Policy Consultant
Los Angeles, CA

Dot Nary, MA
Research Associate, RTC on Independent Living
University of Kansas

Judith Panko-Reis, PhD
Director, Health Resource Center for Women with Disabilities
Rehabilitation Institute of Chicago

Judi Rogers, OTR
Through the Looking Glass
Oakland, CA

Sunny Roller, MA
Research Associate, Dept of Physical Medicine and Rehabilitation
University of Michigan Medical School

Theresa San Agustin, MD
National Institute for Disability Rehabilitation Research
US Department of Education

Mayra Santiago, PhD
Associate Professor, Kinesiology Department
Temple University

Nancy L. Shinowara, PhD,
Health Scientist Administrator and Clinical Research, SCI, Musculoskeletal & Assistive Technology
National Center for Medical Rehabilitation Research, National Institutes of Health

Suzanne Smeltzer, RN, EdD. FANN
Professor and Director, Nursing Research
Villanova University College of Nursing

Alexa Stuifbergen, PhD, RN
Associate Dean of Research, Professor, Dolores V. Sands Chair in Nursing Research
The University of Texas at Austin

JoAnn Thierry, PhD
Behavior Scientist, Disability and Health Division
Centers for Disease Control and Prevention

Margaret Turk, MD
Professor, Dept of Physical Medicine and Rehabilitation
SUNY Upstate Medical Center

Collaborators

Catherine Coyle, PhD
Associate Professor, Kinesiology Department
Temple University

Carol Gill, PhD
Assistant Professor, Human Development
University of Illinois

Amy Jackson, MD
Chair, Dept of Physical Medicine and Rehabilitation
University of Alabama - Birmingham

Wanda Jones, DrPH
Deputy Assistant Secretary, Office of Women's Health
US Dept. of Health and Human Services

Kathy Martinez
World Institute on Disability
Berkeley, CA

Corbette O'Toole
Director, Disabled Women's Alliance
Albany, CA

Vivian Pinn, MD
Director, Office of Research on Women's Health
National Institutes of Health

Laurie Powers, PhD
Associate Professor & Co-Director, Center for Self-Determination
Oregon Health and Sciences University

James Rimmer, PhD
Director, National Center on Physical Activity and Disability
University of Illinois - Chicago

Donna Scandlin, MA
North Carolina Office on Disability and Health
University of North Carolina - Chapel Hill

Carol Sheredos, PT
National Center for Medical Rehabilitation Research
National Institutes of Health

Kristi Woods, MD
Professor, Internal Medicine and Director, Maya Angelou Research Center on Minority Health
Wake Forest University School of Medicine
Winston-Salem, NC

CROWD Personnel

Margaret A. Nosek, PhD
Professor PM&R & Executive Director

Rosemary B. Hughes, PhD
Asst. Prof. Dept. PM&R & Director

Carol Howland, MS
Assistant Professor, PM&R

Heather B. Taylor, PhD
Assistant Professor, PM&R

Susan Robinson-Whelen, PhD
Assistant Professor, PM&R

Michelle Colvard
Research Associate PM&R

Kathy Fire
CROWD Administrator

CROWD Support Staff

Graciela Wright
Kathy Meroney
Martha Mendez
Myriam Espitia

Symposium Table of Contents

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