Improving Health Care Choices for Women with Disabilities: Wagon
2002
by Steven Brown
In the current controversies about abortion, so-called assisted physician
suicides and right-to-life issues, there is a great deal of attention
paid to disabling conditions. Many issues concern sterilization of women
with developmental disabilities. These include paying attention to the
wishes of women who don’t want children or more children and insuring
that those who do want children are able to make their own choices.
The Coalition for Independent Living Options (CILO) in West Palm Beach,
Florida, first became involved with these issues when executive director
Shelley Gottsagen sought health insurance for CILO staff. In meeting with
employees to identify priorities for medical insurance, several wheelchair
users discussed their inability to get into obstetrical and gynecological
offices.
The Problem
While researching health insurance and discussing these issues with staff,
problems that many women with developmental disabilities and mental health
issues had in simply accessing health care came to light. (See Readings
in Independent Living “Intergenerational Skills Training: Teaching
Young People to Make Life Choices.”) CILO worked with a couple wanting
to have a child. The woman was already pregnant when the couple sought
services to help them understand the pregnancy. The assisted living facility
where they resided did not allow children and would not help them.
While mulling over these issues CILO learned about program funding when
the March of Dimes program sent an application form.
THE PLAN
WAGON, which stands for Women’s Access to Gynecological & Obstetrical
Needs, is brand new. CILO is collaborating with the Palm Beach County
Medical Society to promote access for women with disabilities to pre-conceptual
and prenatal counseling to encourage the development and birth of healthy
babies. The program wants women to understand their options and be able
to access gynecological care and genetic counseling.
WAGON’s goals are:
- to educate women with disabilities about gynecological and obstetrical
choices
- to encourage women to obtain pre-conceptual and genetic counseling
- to educate women about caring for themselves before and during pregnancy
- to discuss the importance of folic acid and good nutrition during
pregnancy
- to encourage women to refrain from using drugs and alcohol
- to educate physicians and their staff about accessibility issues
- to assist women in getting gynecological and obstetrical care
- to encourage the development and birth of healthy babies
CILO plans to meet these goals through group presentations and direct
services.
Group presentations will be geared to a particular group’s special
interests. CILO will either travel to a group or host meetings in their
own offices
Direct services will include working individually with women to assist
them to access medical care. CILO also provides information and referral
to direct women to the appropriate community resources or social services
to meet their needs.
PROGRESS
CILO’s goal for WAGON for 2002 is to serve 300 women. To that end,
CILO has hired one part-time staff person who works twenty hours a week
on the program.
CILO believes the only way WAGON will succeed is if they collaborate
with physicians and health care staff. CILO is working with a committee
of doctors in the obstetrical care/gynecological field. Medical professionals
will listen to one another but to few other groups. CILO believes doctors
are even more selective and will listen only to other doctors. As a result
of this strategy, the following successes have been achieved with this
program:
- Local doctors read a magazine called ON CALL. A future issue will
be devoted entirely to making offices accessible to women with all disabilities,
including sensory, emotional or developmental disabilities. It will
be funded by the Palm Beach County Medical Society.
- A brochure describing the program has been published.
- WAGON has taken materials from the March of Dimes and adapted them
to reflect the independent living philosophy
- A curriculum has been developed that includes a sexual education
component
Doctors are being educated not to refuse to accommodate women with communication
disabilities and to hire interpreters for those times when they are
needed.
Although WAGON is a new program it’s already had a positive impact
on the area CILO serves.
Contact Information
Shelley Gottsagen
Executive Director
CILO
6800 Forest Hill Boulevard
West Palm Beach, FL 33413-3310
561-966-4288 (Voice)
561-641-6538 (TTY)
561-641-6619 (Fax)
EMAIL: EXD2000@bellsouth.net
http://www.cilo.org/
Steven Brown
Institute on Disability Culture
Center on Disability Studies
University of Hawai'i
1776 University Ave., UA4-6
Honolulu, HI 96822
SBrown8912@aol.com
http://hometown.aol.com/sbrown8912/
About the Author
Steven E. Brown is currently a Resident Scholar
at the Center on Disability Studies, University of Hawaii at Manoa. Brown,
founder, Institute on Disability Culture (IDC), earned a doctorate in
history from the University of Oklahoma. He directed an independent living
center in Oklahoma, organized numerous community coalitions, and served
as training director at the World Institute on Disability Research and
Training Center on Public Policy in Independent Living. He founded the
not-for-profit Institute on Disability Culture with his wife, Lillian
Gonzales Brown, in 1994. Since then he has become an internationally sought
speaker, trainer, and writer.
Brown's publications include dozens of articles and the books Independent
Living: Theory and Practice, which has been translated into several
languages; Investigating a Culture of Disability: Final
Report, the result of a prestigious Switzer Fellowship from the
National Institute on Disability Rehabilitation and Research of the Department
of Education, the first funding of its type for research into the field
of Disability Culture; A Celebration of Diversity:
an Annotated Bibliography about Disability Culture, Second Edition;
and Celebrating Passion, Relentlessness, and Vision:
the Manifesto Editorials. An award-winning poet, Brown has published
five books of poetry, Dragonflies in Paradise: An Activist's
Partial Poetic Autobiography; The Goddess Approaches
Fifty: Poems; Love into Forever: a Tribute to
Martyrs, Heroes, Friends, and Colleagues; Pain,
Plain--and Fancy Rappings: Poetry from the Disability Culture;
and Voyages: Life Journeys.
In recent years, Brown has conducted writing workshops and residencies
with groups of all ages, especially with middle and elementary school
students. He has written a children's biography about disability rights
pioneer Ed Roberts, distributed a monthly online newsletter and continued
to publish articles about disability culture and disability rights in
a variety of publications. He has conducted trainings throughout the United
States and Europe on a variety of disability related subjects.
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