Access to Healthcare for People with Disabilities
A Primer for Providers and Funders
Produced by:
For more information contact:
Kristy Trautmann
Executive Director, FISA Foundation
kristy@fisafoundation.org
at
1001 Liberty Avenue, Suite 650
Pittsburgh, PA 15222
Phone: 412.456.5550
Fax: 412.456.5551
www.fisafoundation.org
Placing Access to Health Care
for People with Disabilities in Context
People with disabilities are among the most frequent consumers of health care. However, unlike
nondisabled people, they confront myriad barriers to health care that can significantly impact
their health.

Many physicians’ offices lack an accessible entrance, accessible restrooms, or exam
rooms that are large enough to accommodate a wheelchair.

Transportation is a major barrier to making and keeping appointments. Approximately
560,000 people with disabilities indicate they never leave home because of transportation
difficulties (2000 Census).

Individuals with mobility limitations may find it painful or physically impossible to
position appropriately on basic medical equipment (climbing onto an examination table,
standing on a scale, using stirrups for a gynecological examination, standing or holding
arms out to have a mammogram).

Essential health information may not be available in a form they can access (including
large print, audio recording, Braille, or simplified language).

Basic preventative health education (such as counseling about smoking, diet, and
exercise) is frequently ignored; thus overall health quality may be compromised.

Medical examinations and routine procedures may take significantly more time for
people with disabilities, but reimbursement does not compensate for the additional time,
providing a financial disincentive to health providers.

Medical professionals often assume that women with significant disabilities are asexual
and may fail to provide essential preventative care such as breast exams,
mammograms, pap smears, and screening for intimate partner violence.

There is little research investigating why certain diseases (including multiple sclerosis,
lupus, and arthritis) disproportionately affect women.
Adapted from Fiduccia and Wolfe, 1999
An estimated 54 million Americans are living with disabilities that frequently result in
underutilization of the most routine preventative and primary healthcare services (RAND).
Approximately 20 percent of men and 18 percent of women ages 16 to 64 have disabilities.
(2000 Census) Close to 8 million uninsured Americans are people with disabilities (2000
Census). They are among the poorest in our nation — twice as likely as people without
disabilities to have a household income of $15,000 or less (2000 Census). The majority of nonelderly (age 18-64) women with disabilities are on Medicaid (50%) or Medicare (25%). Only
19% have private insurance (Kaiser Disability Survey, 2003).
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Access to Healthcare for People with Disabilities
FISA Foundation - www.fisafoundation.org
Improving Access to Quality Health Care for
People with Disabilities:
How to be a Catalyst for Change
 Include people with disabilities in every step of the design of programs – not as token
representatives or as advisors, but in significant ways as managers, decision makers
and policy makers.
 Provide Specialized Medical Services and Equipment for Women with Disabilities

Women with disabilities cannot go to just any medical provider and receive quality care.
Currently there is a need for specialized primary care and/or gynecological care clinics
that address specific physical and attitudinal barriers to quality medical care. Ideally, as
disability awareness increases and accessibility is improved, the need for specialized
services will decrease. Resource: Women with Disabilities Center at the Rehabilitation
Institute of Chicago www.ric.org/community/womendc.php

Purchase accessible medical equipment such as examination tables that are wide, padded
and height-adjustable to allow for easy transfer from a wheelchair. Resource: Midmark
www.midmark.com or Welner Enabled www.welnerenabled.com/smembers.html

Purchase a lift that tilts back and enables patients to remain in their wheelchairs for
treatment by dentists, optometrists, podiatrists, and physicians.
http://www.wheelchairrecline.com/
 Provide training for medical professionals to increase their awareness and skill in
serving people with disabilities.
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
Conduct disability awareness trainings for providers that cover attitudinal change (such
as the need to listen to and respect the patient) and assumptions (people with disabilities
are not necessarily unhealthy). Language used should be respectful and
nondiscriminatory (e.g., say "person with multiple sclerosis," not “victim of multiple
sclerosis”). Programs, policies and staff approaches should reflect an understanding of
the disability experience that transcends the older "medical model" that emphasizes cure
and "normalization." Resource: “Table Manners and Beyond,” edited by Katherine M.
Simpson, MA, MFCC, and produced by Kathleen Lankasky, BA,LE,
www.bhawd.org/sitefiles/TblMrs/cover.html

Distribute “how to” guidelines on common screening procedures for people with
positioning limitations (x-rays, mammograms, pelvic exams, lower GI series, stress tests.)
Resource: Breast Health Access for Women with Disabilities, www.bhawd.org/
Access to Healthcare for People with Disabilities
FISA Foundation - www.fisafoundation.org
 Advocate for policy change.

Advocate for better insurance coverage for durable medical equipment, transportation
services, home adaptations to encourage independent living, maintenance of physical
therapy during pregnancy, and mental health needs. Realize that needs are dynamic and
change with pregnancy and the aging process. Resource: RAND White Paper Financing
Healthcare for Women with Disabilities, www.rand.org/publications/WP/WP139

Conduct more research about the health of people with disabilities. Pay attention to the
additional issues of gender, age, race, ethnic group, class and sexual orientation of people
with disabilities.

Develop training programs to teach patients how to advocate for their own medical needs,
navigate the health care system, and educate their providers.
 Ensure that health education materials are accessible for people with sight or hearing
loss, mobility difficulties or cognitive disabilities.

Support appropriate communication of health information through interpreter services
and the translation of patient education materials into alternate formats (such as large
print, Braille, audio tape, computer CD, or simplified text). Resource:
www.fpg.unc.edu/%7Encodh/removingbarriers/removingbarrierspubs.htm

Make sure that websites are “Bobby approved” (meaning that they can be easily read by
someone with vision or mobility difficulties) and that materials are available in
alternative formats (tape, large print, Braille, CD). Resource: Disability Funders Network
www.disabilityfunders.org/resource.html
 Recognize that people with disabilities need access to wellness information and
preventative care.

Encourage fitness centers to become inclusive and accessible. Equipment should
incorporate universal designed features that can be used by people with a broad spectrum
of strength and abilities without reducing its usability or appeal to all exercisers.
Resource: National Center on Physical Activity and Disability, www.ncpad.org

Provide parenting information for parents and guardians who have disabilities. Resource:
Through the Looking Glass, www.lookingglass.org/index.php
 Recognize disparities in access to services and work to correct them.
 Violence and abuse affect women (and men) with disabilities at greater rates than those
without disabilities, but many domestic and sexual violence services are not accessible or
responsive to their needs. Work to increase the accessibility of these vital services.
Resource: “Abuse and Women with Disabilities” by Margaret A. Nosek, Ph.D. and Carol
A. Howland, M.P.H. www.ric.org/community/RIC_whitepaperfinal82704.pdf
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Access to Healthcare for People with Disabilities
FISA Foundation - www.fisafoundation.org
Additional Resources
“It Takes More than Ramps to Solve the Crisis of Health Care for People with Disabilities,”
www.ric.org/community/RIC_whitepaperfinal82704.pdf
This is a white paper authored by: Judy Panko Reis, MA, MS, Director, Women with
Disabilities Center, Rehabilitation Institute of Chicago; Mary Lou Breslin, MA, Senior Policy
Advisor, Disability Rights Education and Defense Fund; Lisa I. Iezzoni, MD, MSc, Professor of
Medicine, Harvard Medical School and Medical Director, Beth Israel Deaconess Medical
Center; Kristi L. Kirschner, MD, Director, The Donnelley Disabilities Ethics Program,
Rehabilitation Institute of Chicago.
“The Ten Commandments of Communicating with People with Disabilities,” by Program
Development Associates, www.pdassoc.com/tc.html
Webcast of the national summit, "Breaking Down Barriers to Health Care for Women with
Disabilities," sponsored by the Office on Disability and the Office on Women's Health at the
U. S. Department of Health and Human Services (December 6, 2004)
www.hhs.gov/od/120604meeting.html
Besides the Summit, you may also view the following 45- minute video on the site: “Learning to
Act in Partnership — Disabled Women Speak with Health Professionals.” Kirschner, K. et al.
2001. (Work on this video was made possible by a grant from the National Institute on Disability
and Rehabilitation Research) The video targets health care providers and is available for purchase
at www.ric.org/education/catalog.php.
Disability Funders Network, “A Screening Tool for Disability-Inclusive Grantmaking”
www.disabilityfunders.org
This unique guide helps grantmakers assess the extent to which proposals/organizations include
the issues, perspectives and participation of people with disabilities.
National Council on Disability, “The Current State of Health Care for People with Disabilities”
http://www.ncd.gov/newsroom/publications/2009/pdf/HealthCare.pdf
National Council on Disability undertook this study in 2007 to focus the nation’s attention on the
health care disparities experienced by people with disabilities, and to provide information and
recommendations that can help to eliminate health care inequities for people with disabilities.
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Access to Healthcare for People with Disabilities
FISA Foundation - www.fisafoundation.org
FISA Foundation – Sample Grants
Women with Disabilities Access to Health Care Initiative
Uncompromising Commitment and Innovation among Community Organizations
Because both women and people with disabilities are most likely to utilize medical services
(Saxton, 1996), it is not surprising that women with disabilities are among the most frequent
consumers of health care. However, unlike nondisabled women, women with disabilities
confront a variety of barriers to offices and equipment, the unavailability of essential health
information, the paucity of research on various disabling conditions in the context of treatment
for women-specific illnesses, and the negative attitudes of many healthcare providers (Fiduccia
and Wolfe, 1999).
The Women with Disabilities Access to Health Care Initiative was established by the FISA
Foundation in 2000 to improve access to healthcare for women with disabilities. Through the
networking of resources, the development of a research base, and the implementation of
educational protocols, its goal is to significantly increase awareness while reducing physical and
attitudinal barriers to health care. Some of the grant-funded programs and projects are described
below. Many of the organizations are collaborating to make the Pittsburgh region a model for
healthcare for people with disabilities.
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
Adagio Health – www.fhcinc.org
Adagio Health (formerly Family Health Council) provides reproductive health care and
other health services to women in western Pennsylvania. They are improving access to
services for women with disabilities through training their entire medical staff as well as
purchasing accessible examination tables.

Association of Professors of Gynecology and Obstetrics – www.apgo.org
APGO is developing two online curricula that will improve the healthcare of women with
disabilities. The interactive Health Professions Curriculum primarily focuses on attitudes
about living with disabilities and explicitly provides training in how to develop
participatory and “co-expert” therapeutic relationships with patients. The interactive
Patient Curriculum includes a range of topics including: building effective relationships
with caregivers; the prevention of injuries, unintended pregnancies, sexually transmitted
infections and interpersonal violence; self-advocacy and effective communication skills;
and self-care tips to reduce common complications such as bladder infections and skin
breakdown. The Fall 2005 issue of the APGO Reporter has an article describing the
project and its need for additional funding: www.apgo.org/binary/Reporter1205.pdf

Cornerstone Care, Inc. - www.cornerstonecare.org
To increase access to healthcare services for patients with disabilities in Washington,
Greene and Fayette Counties, Cornerstone Care purchased equipment to serve patients
with mobility difficulties (including bariatric, geriatric, and disabled patients).
Access to Healthcare for People with Disabilities
FISA Foundation - www.fisafoundation.org
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
Consumer Health Coalition - www.consumerhealthcoalition.org
Disabilities Agenda: A Self-Directed Agenda for System Change convenes people with
disabilities and advocates for access to health care and insurance coverage for individuals
with all types of disabilities.

Every Child, Inc. - www.everychildinc.org/
Healthy Infants for Women and Teens with Disabilities provides pre-natal, post-natal and
Doula support to pregnant women and teens in Allegheny County with physical and sensory
disabilities, mental health conditions, cognitive disabilities, and/or special healthcare needs.
The project’s goal is to foster birthing of healthy infants by identifying women early in their
pregnancies and providing them with comprehensive, disability-sensitive support and
advocacy through pregnancy, birth, and until the child is one year of age.

Eye & Ear Foundation - www.ophthalmology.medicine.pitt.edu/giving.asp?id=132
Automated Retinal Imaging System
This joint program between Eye & Ear Institute and Magee-Womens Hospital provides
retinal imaging, diagnosis and treatment for diabetic women who are at a high-risk for
losing their sight during pregnancy as a result of diabetic retinopathy. Pregnancy can
dramatically accelerate the progression of diabetic retinopathy for the nine percent of
women over the age of 20 who have diabetes. It is estimated that up to 27 percent of all
pregnant women who have diabetes will be diagnosed with diabetic retinopathy. Women
with diabetes who seek prenatal care at Magee’s clinic receive routine screening using
the Automated Retinal Imaging System. Ophthalmologists at the Eye & Ear Institute
provide treatment and follow-up to patients who need it. If detected and treated early, loss
of sight from this disease can be avoided.

Hospital Council of Western Pennsylvania - www.hcwp.org/
Every Contact Counts is a training program designed to help health care providers learn
about the unique needs of patients with physical disabilities and initiate dialogue for
removing attitudinal and physical barriers to care. On-site sensitivity training is delivered
to all levels of hospital staff through problem-based learning. Training materials are
designed in a train-the-trainer format.

Magee-Womens Hospital of UPMC Health System www.magee.edu/ClinicalServices/wwpd/wwpd2.html
The Comprehensive Healthcare Center for Women with Physical Disabilities is a
designated clinical site staffed by a multidisciplinary team where women with physical
disabilities can receive comprehensive health care, including preventative screenings.

National Multiple Sclerosis Society, Allegheny District Chapter www.nationalmssociety.org/mycommunity/chapter.asp?ChapterID=76&sstate=PA
Home-based Gynecological and Breast Care for Women with Multiple Sclerosis offered
in-home breast exams, pelvic examinations and Pap tests to women with multiple
sclerosis. Currently the Chapter is developing a program to screen women with Multiple
Sclerosis for domestic violence and increase victims’ access to services by providing
emergency assistance when needed.
Access to Healthcare for People with Disabilities
FISA Foundation - www.fisafoundation.org

Pittsburgh Action Against Rape (PAAR) - www.paar.net
Sexual Violence Information and Support Services for Women with Disabilities consists
of a multifaceted collaboration of agencies aimed at the prevention of sexual
victimization of women with disabilities and improvement of services for women who
have already been abused.

RAND - www.rand.org/publications/WP/WP139/
Financing Health Care for Women with Disabilities resulted in a white paper to inform
public and private stakeholders and decision makers about the financial issues preventing
utilization of health services by women with disabilities. These issues include
reimbursement, healthcare coverage, provider and payer incentives, as well as costeffectiveness and preventive care. Given today’s cost-conscious healthcare environment,
this is an area where there is a significant need for further research and policy change.

University of Pittsburgh/Center for Research on Health Care www.crhc.pitt.edu/faculty/faculty.asp
The work of the Allegheny County Task Force on Behavioral Health Services for Deaf or
Hard-of-Hearing Persons led the University to design a series of focus groups to gather
data and make recommendations on improving the recognition and accessibility of
Mental Health services for people with hearing loss.

University of Pittsburgh Department of Physical Medicine and Rehabilitation in
partnership with UCLID (University, Community, Leaders and Individuals with
Disabilities) - www.uclid.org:8080/index.html
Partners for Accessible Health care for Women is a web-based resource guide listing
healthcare providers who are sensitive and experienced in treating women with
disabilities (www.disabilitymedicalresources.org/). The resource guide was developed
using patient satisfaction questionnaires, provider site visits, and focus groups of women
with disabilities.
Saxton, M. (1996). Teaching providers to become their allies. In Krotosky, D., Nosek, M.A. & Turk, M.A. (Eds.)
Women with Physical Disabilities: Achieving and Maintaining Health and Well-being. Baltimore: Brookes
Publishing.
Fiduccia, B. & Wolfe, L. (1999). Women and Girls with Disabilities: Defining the Issues. An Overview.
Washington, DC: Center for Women Policy Studies.
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Access to Healthcare for People with Disabilities
FISA Foundation - www.fisafoundation.org