**Breaking Down Barriers to Health Care for Women with Disabilities**

**A White Paper from a National Summit**

December 2004

Washington, DC

> ![](media/image1.png){width="2.729861111111111in"
> height="2.8097222222222222in"}

**Office on Disability**

**Office on Women's Health**

**U.S. Department of Health and Human Services**

This report was developed under contract number HHSP23320040076P by the
National Center for Policy Research for Women and Families for the
Office on Disability, Office of the Secretary, U.S. Department of Health
and Human Services.

The content of this report is in the public domain and may be
reproduced. Citation is appreciated. Copies of this report may not be
sold without the express approval of the Office on Disability, U.S.
Department of Health and Human Services.

The views, opinions and recommendations are those of the individual
presenters and participants at the summit and do not necessarily
represent those of the office on disability, the office on women's
health or the u.s. department of health and human services.

Breaking Down Barriers to Health Care for Women with Disabilities

A White Paper and Action Plan from a National Summit

Table of Contents

**Introduction**.................................................................................\......\...\...4

**Framing the Issues: What Do We Know?**
.........................................\.........\.....6

> Jo Ann Thierry, PhD, Centers for Disease Control and
> Prevention......\.............\...\...7
>
> Margaret Turk, MD, SUNY Upstate Medical
> Center.........................................8
>
> Judith Panko-Reis, MA, MS, Rehabilitation Institute of Chicago
> ....................\....10
>
> Sharman Word Dennis, MEd, Rose
> Inc......................................\...\...\...\...\........12

**Promising Practices.**..............................\.........
........................................13

> Kristi Kirschner, MD, Rehabilitation Institute of
> Chicago................\.................14
>
> Florita Maiki, MA, Breast Health Access for Women with Disabilities
>
> Berkeley,CA............\......................................................................16
>
> Jennifer Potter, MD, Women's Health Learning Competencies,
>
> Association of Professors of Gynecology and
> Obstetrics............................\...18

**Vision**
.................................................................................................20

**Action
Plan**......................................................\.....................................21

**Appendices**

> A.
> Presentations..............................................................................
>
> B. Presenter biographies............
>
> C. Participant list............
>
> D. Summit Work Group Members............

**1. Introduction**

A 42 year-old woman with paraplegia notices a lump in her right breast.
Her medical provider tells her it is a bulging pectoral muscle from
pushing her wheelchair. Later diagnosed with Stage III breast cancer,
she dies within 3 years.

A 69 year-old woman is recovering from a stroke which has left her
paralyzed in the right arm and leg. She has always had regular check-ups
in the past, but now wonders how she is going to climb onto an exam
table for a breast exam, or stand for mammography. (Case studies from
Breast Health Access for Women with Disabilities www.bhawd.org)

Of the more than 140 million women living in the United States today, an
estimated over 28 million of them---one in five---have disabilities with
which they were born or acquired. Disability is not the same thing as
illness, and many women with disabilities can, and do lead otherwise
healthy lives. However, disabilities can present a broad array of
challenges for women---including challenges in access to health care
services and programs to maintain good health.

As has been suggested in the evocative title of a recent publication,
accessibility to good health care and services means more than ramps. It
means better informed health care providers who are better educated
about and trained to meet the full range of health care needs of women
with disabilities---and not just focus on the disability itself. It
means equipment and facilities that are accessible for women with
disabilities, preserving their dignity and independence. It also means
policies and programs that can help overcome attitudes and prejudices
that, unfortunately, continue to reinforce the stigma associated with
disability.

The Office on Disability and the Office on Women's Health, both part of
the U.S. Department of Health and Human Services, recognized that good
health is a prerequisite for contributing, independent and self-directed
lives in the community for women with disabilities, the hallmark of the
President's New Freedom Initiative. They recognized that, without good
health, employment and education, community engagement and family life
all can be compromised. Thus, on December 6, 2004, the two Offices
convened a national Summit, Breaking Down Barriers to Health Care for
Women with Disabilities, that was co-sponsored by the Interagency
Committee on Disability Research

at the U.S. Department of Education, and coordinated by the National
Center for Policy Research for Women and Families.

In her opening remarks to those attending, Dr. Margaret Giannini, MD,
FAAP, Director of the Office on Disability, stated "In his Freedom
Initiative, President Bush stated 'My administration is committed to
tearing down the barriers to equality faced by many of the 54 million
Americans with disabilities.'" She urged participants to identify ways
to do just that when it comes to the health and wellbeing of women with
disabilities.

The summit explored ways in which health care professionals and health
care facilities can overcome barriers to the best possible care for
women with disabilities. It featured promising effective programs and
new paradigms for approaching the health of women with disabilities that
have helped improve access and, ultimately, quality of care including
projects that focus on educating health care professionals. The summit,
attended by 50 participants including representatives from provider
associations, legal experts, advocates, health care providers,
government officials, and researchers, featured national experts who
explored issues and highlighted these promising practices. (See the
participant list in the Appendix B.) The goal of the summit was to
develop an action plan that can be used during the next few years to
make progress in improving access to healthcare for women with
disabilities.

This white paper not only summarizes the conference deliberations, but
also delineates that plan of action. Biographies of presenters, contact
information for participants, as well as the full text of each
presentation, are found in the appendices to this white paper. The
morning portion of the summit was webcast live and is available on the
Office on Disability website http://www.hhs.gov/od\" . A recording can
be accessed online by accessing the "women's issues" section of the
website and clicking on "audio webcast". A limited number of DVDs of the
Summit are available on request from the Office on Disability on a
first-come, first-served basis for persons with blindness or limited
vision.

2\. Framing the Issues: What Do We Know?

Four experts provided Summit participants with a portrait of the
challenges to accessing health care faced by many women with
disabilities.

-   Jo Ann Thierry, PhD, (Centers for Disease Control and Prevention)
    offered an overview of current research knowledge related to health
    care access for women with disabilities.

-   Margaret Turk, MD, (State University of New York Upstate Medical
    Center), described health care provider issues related to serving
    women with disabilities and suggested ways to improve provider
    preparation and continuing education to meet these women's needs.

-   Judith Panko-Reis, MA, MS, (Rehabilitation Institute of Chicago)
    discussed the role of the Americans with Disabilities Act can and
    must continue to play in improving access to care.

-   Sharman Word Dennis, MEd, (Rose Inc.), described the additional
    health care access problems faced, in particular, by women of color
    with disabilities.

A summary of the presentations follows. The full text and/or copies of
the PowerPoint slides that accompanied the presentations can be found in
Appendix A.

**Identifying Barriers to Health Care: the Current Research**

JoAnn Thierry, PhD, MSW

Centers for Disease Control and Prevention

**Background**

In recent years, women's health has emerged as a prominent public health
priority. Research focused on women's health has led to valuable
information about how and why certain diseases affect women
disproportionately, predominantly, or differently than men. It has also
led to a better understanding of the differential health risks faced by
particular subpopulations of women, such as those who are members of
racial and ethnic minority groups. Yet despite the increased awareness
of women's health, research to date has not adequately addressed the
health concerns of women with disabilities. In general terms, disability
refers to "limitations in physical or mental function, caused by one or
more health conditions, in carrying out socially defined tasks or
roles". There are approximately 26 million women living with
disabilities in the United States. Estimates of the prevalence of
disability among women range from 16% to 18% depending on the
definitions used.

**Barriers**

Women with disabilities face substantial barriers that limit their
access to healthcare services including physical, attitudinal, and
policy barriers; lack of information about how disability affects
health; limited finances; and insufficient personal assistance.

Recent studies suggest that women with disabilities encounter many of
the same health problems as women who are not disabled, yet they
consistently report poorer health. These findings also identify
disparities between women with and without disabilities on a number of
leading health indicators. Data was presented that summarized selected
disparities including access to healthcare, provision of clinical
preventive services, overweight and obesity, and physical activity.

**Conclusions**

The public health community has begun to recognize and address the
health concerns of women with disabilities. However, increased efforts
are needed to improve collaboration among women with disabilities, and
federal, state and local organizations to identify short and long-term
strategies for reducing health disparities among this population of
women.

**Barriers to Health Care for Women with Disabilities:**

**Education of Healthcare Providers**

Margaret A. Turk, MD

SUNY Upstate Medical University

**Background**

There are approximately 26 million women with disabilities in the U.S..
These numbers are increasing as improved medical care helps more people
survive serious illness and injury that result in permanent
disabilities. Women with disabilities are among the most economically
disadvantaged, and this increases their risk of health problems. As a
group, they have lower socioeconomic status, less education, and are
less likely to be married. Millions of people with disabilities have
contact with healthcare providers every year, including physicians,
physician assistants, nurse practitioners, nurses, therapists (e.g.
physical, occupational, speech/language), psychologists, social service
providers, and technicians (e.g. phlebotomy, respiratory, radiology).

**Barriers**

Currently no educational requirements exist in any health care provider
certification that attend to the significant and specialized needs of
persons with disabilities. Three areas of education must be considered:
attitudes, knowledge and skills. Healthcare providers acknowledge a lack
of knowledge and skills in providing care to women with disabilities.
However, it is not clear to what extent they acknowledge issues
surrounding negative attitudes toward people with disabilities. Research
indicates that health care providers' attitudes toward people with
disabilities are generally negative, although they vary depending on
type of disability, age, and gender. The literature supports the
positive effects of contact, experience, and education on providers'
attitudes toward people with disabilities.

With respect to knowledge and skills, existing curricula fulfill broad
requirements, and issues specific to women with disabilities can get
lost in the larger picture of undergraduate, graduate, and continuing
education. Curricular reform requires prioritization of many topics
competing for attention. Providers often find it difficult to approach
someone with a disability, let alone examine them. Communication is now
a significant competency in medical education. For exams, skills are
required for positioning, transfers, general exams, and gynecologic
exams.

Providers often find that while caring for women with disabilities is
more time-consuming than is care for women without disabilities, public
and private insurer reimbursement rates remain the same as for other
patients. This poses some potential disincentive for providers to work
with women with disabilities or to extend services beyond those directly
related to their disabilities.

**Conclusions**

Despite the current lack of educational requirements, there are
successful programs to address provider attitudes, knowledge and skills,
such as the curriculum being developed by the Association of Professors
of Gynecology and Obstetrics. Kaiser Permanente also has a long-standing
provider education program aimed at improving competency in caring for
people with disabilities. There is also on-going research in this area.
A program through the American Medical Students Association, supported
by the American Medical Women's Association, is surveying students about
what they actually learn about health care for women with disabilities.
The American College of Obstetricians and Gynecologists will soon
publish a paper based on their research identifying these issues.

**It Takes More than Ramps to Solve the Crisis of Healthcare**

**for People with Disabilities**

Judith Panko Reis, MA, MS

Rehabilitation Institute of Chicago

**Background**

*It Takes More than Ramps to Solve the Crisis of Healthcare for People
with Disabilities,* a policy paper published in September 2004, examines
how the U.S. healthcare system is not structured to provide safe
patient-centered care to people with disabilities It highlights gaps
between safe, patient-centered care and the reality people with
disabilities experience; explores the role of the ADA to improve access
to health care; and recommends ways to bridge the gaps. Major findings
of the policy paper recognize that:

People with disabilities use healthcare services at a higher rate than
people without disabilities, yet commonly express dissatisfaction with
their healthcare. They are susceptible to disparities in health care,
and experience widespread lack of appropriate accommodations.

The roots of shortfalls in quality of care and safety include inadequate
training of clinicians, poor executive oversight to enforce the ADA,
limited funds and few financial incentives.

Healthcare institutions have the moral and legal responsibility to take
action to improve healthcare delivery for people with disabilities in a
safe, patient-centered, and culturally competent way.

**Barriers**

Little agreement exists among both providers and consumers about the
precise meaning of the concept of accommodation for persons with
disabilities. When health care providers neither understand nor
implement the requirements of the Americans with Disabilities Act, they
place themselves and their institutions at liability risk; they place
their patients with disabilities in jeopardy of not being able to gain
access to necessary care and services. Examples of the failure to make
reasonable accommodations include such matters as not having an
interpreter on staff or not asking a family member of a deaf or hearing
impaired patient to provide interpreter services during an examination;
examining a patient in her wheelchair instead of on an exam table; or
having a security guard rather than a member of the clinical staff
transfer a woman from her wheelchair to an exam table. Persons with
disabilities, themselves, often are unaware what they can do to promote
equity in their care as required under the Americans with Disabilities
Act. Thus, education for both providers and persons with disabilities
would benefit both in the healthcare setting.

However, combined state and federal ADA implementation efforts and
community advocacy have led to useful guidelines and model projects
under the Medicaid program that are working to benefit persons with
disabilities. Center for Medicare and Medicaid Services (CMS) Guidelines
for Medicaid Managed Care today reflect the ADA. While not enforceable
guidelines, they help by providing examples of how to make
accommodations for persons with disabilities. Disability rights
advocates won a landmark, ADA-based class action suit against Kaiser
Permanente of California in 2000. A similar class action suit against
Washington Hospital Center in DC was filed in 2003.

**Conclusions**

Federal and state enforcement of the ADA and private litigation have
spurred important, albeit modest reforms in healthcare services for
persons with disabilities. However, many challenges remain, including
that most hospitals, large facilities and medical provider offices have
not provided more than architectural accessibility. Also, many private
office-base medical \\ have little awareness of the requirements of the
ADA, including their obligation to determine if a patient with a
disability requires an accommodation and to provide that accommodation
if possible.

**Women of Color with Disabilities: Triple Jeopardy**

Sharman Word Dennis, MEd

Rose, Inc.

**Background**

Women with disabilities report limited access to important health care
services. Barriers include insufficient numbers of obstetrical care
providers with knowledge about specific disabilities, a dearth of
accessible mammography and pelvic exam equipment, and a lack of adequate
fertility control services and sexual health information for women with
disabilities. All too often, women of color with disabilities experience
the impact of a \"triple jeopardy\": race, gender, and disability, when
it comes to gaining access to appropriate needed health care services.
In addition to coping with issues related directly to their
disabilities, minority women also have to negotiate economic, social,
and cultural factors that can hurt their health. Disparities in
educational resources, lower wage jobs, and higher unemployment rates
found in some minority groups are barriers to high-quality, affordable,
and accessible healthcare.

**Barriers**

Women of color with disabilities use fewer health services and continue
to suffer more from premature death, disease, and secondary
disabilities. Some barriers to care affect women with disabilities of
all races, such as policies that deny services to women who cannot
easily get up onto exam tables, or that let doctors refuse to see women
with disabilities. For women of color with disabilities, especially dark
skin color or those who speak with an accent, additional barriers exist
such as a lack of communication, validation and respect. Women of color
are more likely to lack insurance and therefore are often unable to
receive adequate services. Studies reporting on disparities in access to
healthcare among women of different racial and ethnic origins in the
U.S. have been summarized in reports by the Agency for Healthcare
Quality and Research.

**Conclusions**

Women of color with disabilities must identify health care providers who
are accepting of all people: people of color and those with
disabilities. Medical students and other providers need to be trained to
meet the needs of this population. While it is important to enforce
legislation, we also must work to change attitudes. We need to create a
paradigm shift within society for total acceptance and inclusion of
people with disabilities and people of color.

**3. Promising Practices**

Summit participants next learned of promising programs that can be
adopted and adapted to improve access to health care and services for
women with disabilities.

-   Dr. Kristi Kirschner, MD, Medical Director of the Center for Women
    with Disabilities at the Rehabilitation Institute of Chicago , who
    shared information about her Center and the lessons learned from its
    more than a decade of service.

-   Florita Maiki, MA, of the Breast Health Access for Women with
    Disabilities in Berkeley, CA described the challenges and
    opportunities experienced by her program focused on individualized
    breast health services for women with disabilities.

-   Dr. Jennifer Potter, MD, of both the Beth Israel Deaconess Medical
    Center, and the Association of Professors of Gynecology and
    Obstetrics Women's Health Learning Competencies program, discussed
    efforts to develop and implement new curricula in women's
    health---including the health of women with disabilities---for both
    undergraduate and postgraduate medical education.

A summary of the presentations follows. The full text and/or copies of
the PowerPoint slides that accompanied the presentations can be found in
Appendix A.

**Women with Disabilities Center, Rehabilitation Institute of Chicago**

Dr. Kristi Kirschner, MD, Medical Director

Center for Women with Disabilities, Rehabilitation Institute of Chicago

**Program Description**

The Women with Disabilities Center at the Rehabilitation Institute of
Chicago (RIC) was established in 1991. The Center's mission focuses on
empowerment:

The Center is dedicated to providing services that empower women and
girls with disabilities to practice self-determination in achieving
emotional and physical wellness. To meet this goal, the Center provides
services free of charge centered on advocacy, support, education and
combating the inherent isolation of women and teenage girls with
disabilities.

The Center provides a range of services---all of which are accessible.
The clinic provides not only physical access, but also accessible
examination tables that were developed under the guidance of Dr. Amie
Jackson, who created the first accessible reproductive health clinic for
women with disabilities in the country. The Center both provides basic
reproductive health services on-site, and has also facilitated
relationships within the community for mammography and colonoscopy
services. The program also has accessible prenatal care services,
available through its sister hospital, Northwestern University Medical
Center.

Their wide-ranging support services include:

-   Library and information center

-   Referral network

-   Weekly peer support groups

-   Individual consultation

-   Parenting support

-   Domestic Violence Program

-   Teen Mentoring Program

Educational activities include:

-   Seminars for the community---at least 3 times per year, full day

-   In-service training opportunities

-   Health care provider education

-   Newsletter---Resourceful Woman---published once or twice per year

The Women with Disabilities Center conducts research and evaluation
projects in such areas as provider attitudes and knowledge about people
with genetic disabilities. Advocacy is also an important aspect of the
Center's work. At the level of the individual, Center staff works to
educate patients about their rights; at the community level, staff
educates about and advocates for accessible health services. They
participate in many

task forces and committees to insure that the issues of women with
disabilities are represented.

**Lessons Learned**

The Center represents a collaboration between women with disabilities
and RIC staff, a factor that contributes to its significant success.
Women with disabilities have been included in the development of the
Center from its inception. Today, women with disabilities represent one
of the driving forces behind the ongoing work of the Center.

The Center's ultimate aim is to make the provision of services through
such a separate health care providing entity unnecessary. To that end,
the Center developed an educational video, funded by the federal
National Institute on Disability and Rehabilitation Research that
focuses on the provision of health services for women with disabilities
is directed toward practicing health care providers to identify ways in
which they, too, can provide client-centered care for women with
disabilities.

The Center's work clearly shows, however, that strong financial and
community-based support is necessary to provide comprehensive services.
Most of the non-medical services provided by the Center are funded
through donations and grants.

**Breast Health Access for Women with Disabilities**

Florita Maiki, MA

Alta Bates Summit Medical Center, Rehabilitation Services Department,
Berkeley, California

**Program Description**

The Breast Health Access for Women with Disabilities (BHAWD) program is
an award winning program that was established in 1995 and began
providing free clinical services in 1997. The program has four main
goals:

Reduce barriers that prevent many women with disabilities from obtaining
early cancer detection services

Develop alternative protocols and techniques for clinical care

Increase awareness and sensitivity as well as enhanced material
knowledge through publications and educational seminars

Identify public policy issues in order to facilitate effective changes
in state and national programs

The program is the product of a collaboration among women with
disabilities, breast cancer survivors, Independent Living Centers, and
the Alta Bates Breast Center and Physical Rehabilitation Department at
the Alta Bates Summit Medical Center. The program seeks to ensure that
women with disabilities receive breast and reproductive health
information and all appropriate health care, diagnostic, and screening
services, and that policy initiatives are inclusive for women with
disabilities. To help achieve that goal, women with disabilities are
involved in planning, implementation and evaluation of the programs and
services provided by BHAWD.

The program also conducts research on screening rates and the prevalence
of barriers to screening and other women's health-related services for
women with disabilities; it also provides, ongoing outreach and
education to diverse, populations (e.g. cognitively impaired, aging,
deaf/hard of hearing) to help improve their access to and knowledge of
needed care and services. Educational tools have been developed and set
in place, such as an education module for women with cognitive and
developmental disabilities, and a health care provider manual, *Breast
Health and Beyond for Women with Disabilities: A Provider's Guide to the
Examination and Screening of Women with Disabilities*. The BHAWD program
also developed the first American Society of Radiologic Technologists
accredited mammography training modules in California that include
cultural competency, as well as positioning techniques specific to women
with different types of disabilities.

The BHAWD program also provides training and accessibility assessments
for medical providers and clinic personnel in clinical health care
settings. A pilot project to assess the accessibility of mammography
facilities developed a three-part Mammography

Accessibility Assessment instrument designed to evaluate the
accessibility of an individual mammography facility and its equipment.

BHAWD's clinical services provide BHAWD's clinical services include free
clinical breast exams, provided by a nurse practitioner. They have
accessible exam rooms equipped with multi-positioning exam tables.
Attendant services and assistance with transfer are made available to
all patients. They also provide BSE education to our patients. They make
referrals to mammography facilities that can accommodate most women.
Consumer clinic forms are available in alternative formats, such as
Braille, audio tapes, large print and disk format. They also provide a
women's educational preparedness/wellness program in client settings,
such as to women in board and care homes.

The Mammography Accessibility Initiative includes:

-   Adapted protocols

-   Training- e.g. staff, technologists

-   State wide Advisory committee to look at larger policy issues

-   Accessibility Assessment

-   Programs to increase awareness and education (articles, conferences)

**Lessons Learned**

To help facilities (and providers) become more accessible and sensitive
to the healthcare needs of women with disabilities, programs and
providers should:

-   Emphasize that women with disabilities are women first

-   Include the larger comprehensive topic of accessibility in all
    education and outreach activities and strategies

-   Create flexibility within the program and its components to
    accommodate innovation and creativity

-   Seek and include input from women with disabilities in all aspects
    by focus groups, etc.

-   Provide necessary accommodations to individual women

-   Modify clinical and scheduling protocols---use or revise BHAWD's
    clinical protocols

-   Acquire additional information and skills---encourage professional
    associations to include wellness and disability in their
    conferences, curriculum, etc.

-   Set up communication and collaboration with referring services-
    mammography, x-ray, lab, etc.

-   Integrate disability awareness education into staff in services and
    meetings

-   Include access and disability education into goals and outcomes into
    quality improvement plans

-   Purchase accessible equipment---lifts, scales

-   Work in partnership with family members, board and care providers,
    and administrators when providing services to women with cognitive
    developmental disabilities - collaborate, collaborate, collaborate

-   Consult women with disabilities to determine appropriate images and
    language of outreach and educational materials

-   Work in partnership with community-based groups, breast health and
    women's health advocates and agencies and women's state funded
    organizations

-   Create an advisory committee that includes women of color and
    younger women with disabilities

**APGO/WHEO Women's Health Care Competencies for Medical Students**

Jennifer Potter, MD

Beth Israel Deaconess Medical Center

Boston, MA

**Program Description**

The Women's Health Care Competencies Project of the Association of
Professors of Gynecologists and Obstetricians (APGO) and the Women's
Health Education Office (WHEO) is a curricular tool that can provide
needed professional education for health care providers on caring for
women with disabilities. The project is intended to ensure the
iinclusion of gender-specific information and materials in medical
education, since gender plays a key role in both the promotion of
wellness and the prevention and treatment of health conditions. medical
students, regardless of their planned specialty following graduation,
must know how to care appropriately for female patients based on a
female, rather than male model of health care. Despite increasing
recognition of the importance of gender differences, undergraduate
medical curriculum reform has been slow.

The project focused on two key goals

-   To identify women's health care competencies for medical students,
    and

-   To develop a tool to evaluate, improve, and integrate these
    competencies into undergraduate medical education. A similar tool
    developed for undergraduate medical education, may be readily
    adapted to postgraduate (residency) medical education and continuing
    medical education.

The project began in November 2000 with a large interdisciplinary
retreat of women's health experts who developed a pamphlet entitled
"Women's Health Care Competencies for Medical Students." "Competency" is
defined as the basic knowledge, skills, and attitudes trainees need to
develop in order to provide appropriate preventive care and treatment to
women. Eight core competencies were identified:

Explain sex and gender differences in normal development and
pathophysiology

Effectively communicate demonstrating awareness of gender and cultural
differences

Perform a sex, gender, and age appropriate physical exam

Discuss the impact of gender-based societal and cultural roles on health
care

Identify and assist victims of physical, emotional and sexual violence
and abuse

Assess and counsel women for sex- and gender-appropriate reduction of
risk

Access and critically evaluate new information and adopt best practices
of sex and gender differences in health and disease

Discuss the impact of healthcare delivery systems on populations and
individuals

In 2001, a list of learning objectives was developed for two of the
eight core competencies. For each learning objective, an appropriate
level of competence, evaluation method, and pertinent references were
assigned. This phase of the project was a collaborative effort of the
APGO Undergraduate Medical Education Committee (UMEC), the Professional
Education Working Group of the National Centers of Excellence in Women's
Health (NCoE), and the WHEO Multidisciplinary Task Force.

In 2003, an interdisciplinary group of women's health experts gathered
again to develop learning objectives for each of the other six
competencies, and in 2004 they completed our finished product, an
on-line Curriculum Builder, that can be accessed at
www.apgo.org/wheocomp.

WHEO has presented this work at various meetings, including a
semi-annual NCoE conference, American Medical Women's Association (AMWA)
meeting, CREOG/APGO meeting, the Association of American Medical
Colleges (AAMC) annual meeting, VCU School of Medicine Women's Health
Conference, and the International Association of Medical Science
Educators meeting Their next step will be to publicize an RFA for
Demonstration Projects (funded by the Ford Foundation), in April, 2005.
Information will be available soon at www.apgo.org.

An additional feature of the Curriculum Builder is the ability for
anyone to save curricula on the web site and access other saved
curricula as well, in effect creating a free library of on-line
curricula that address different topics. The intent is to provide a
useful template that will help medical educators identify and
incorporate key sex and gender information into curricula easily and
efficiently.

**4. Vision Statement**

Following the Summit presentations, Summit participants began the
process of developing an Action Plan to guide program and policy
development over the two years following the Summit. As a first step in
that process, participants brainstormed a series of
statement---culminating in an overarching Summit vision statement of
what, in community-based practice, is meant by full access to health
care for women with disabilities.

The vision statement, once developed, served as a springboard for
creative deliberations that led to the Action Plan, presented by Summit
participants to both the Office on Disability and Office on Women's
Health, to inform future work at all levels of government, in health
provider education, and in communities nationwide.

-   All providers and their staff will be educated on how to care for
    people with disabilities, and their facilities will be built using
    the principles of universal design, accessible to all.

-   Quality improvement will be based on evidence-based practice, and
    will be fundamental to the system.

-   Health care system personnel will reflect the diversity of the
    general population, and the quality and quantity of care will not be
    affected by race, health status, gender or other individual
    characteristics.

-   People will increasingly take responsibility for their own health
    and well-being.

**5. Action Plan**

The Action Plan, developed by conference participants in dynamic
exploratory dialogues during the conference, makes a series of
recommendations to address the health care challenges faced by women
with disabilities. It was based on the brainstorming of the summit's
four working groups, which developed effective goals and strategies for
addressing key barriers. Each work group addressed a different topic
area:

-   Americans with Disabilities Act (ADA) and access issues

-   Financing issues

-   Health promotion

-   Provider education.

Critically, participants focused on developing goals that would be
achievable in one to two years. A planning grid guided each work group
to define the current situation, key stakeholders, resources needed,
objectives that need to be achieved to reach the goal, and first steps
to immediately get the process going. This section delineates the
two-year-focused action plan that resulted from deliberations by each of
the work groups and later agreed upon by all Summit participants.

**Americans with Disabilities Act (ADA) and Access Issues**

While women with disabilities need accessible equipment in the
healthcare setting, this need has not yet been either widely recognized
or adopted. Hospital and medical facility accreditation bodies do not
consistently consider accessibility issues. .

The goal is to ensure that accessible equipment is available on a
routine basis in health care providers' offices, hospitals, and
hospital-based and other outpatient clinics and programs. Particular
emphasis should be placed on the availability of accessible mammography
services.

**Objectives:**

-   Convene a meeting of stakeholders involved in accrediting facilities
    to develop effective strategies.

-   Explore modification of the Food and Drug Administration standards
    for approval of medical devices to include accessibility issues.

-   Assist the Department of Justice in developing model policies for
    settlements and disseminating results.

-   Showcase trendsetters and model practices as a means of sharing
    information\-\-- create a gold standard for disability competence.

**Key Stakeholders:**

-   HHS - Office on Disability, Office of Developmental Disabilities,
    Office on Women's Health Centers of Excellence, Center for Medicare
    and Medicaid Services, Food and Drug Administration, Office for
    Civil Rights

-   Women with disabilities and their families

-   Joint Commission on Accreditation of Healthcare Organizations

-   Commission on Accreditation of Rehabilitation Facilities

-   American Hospital Association

-   Department of Justice

-   Department of Transportation

**Needed Resources:**

None noted

**Next Steps:**

Create internet-based resources with the assistance of HHS and the
National Research Center for Women and Families in compliance with 508
standards.

**Financing Issues**

Discrepancies exist in the public and private healthcare insurance
systems that work at a disadvantage to persons with disability; for
example, providers may not receive reimbursement commensurate with the
additional time they may be required to take when serving patients with
disabilities. Under Medicaid, unless an individual state seeks a waiver
from the Centers for Medicare and Medicaid Services, providers are
reimbursed at fixed rates set by state Medicaid agencies. Due to
generally low Medicaid reimbursement rates for treating individuals with
disabilities, such individuals may have trouble receiving medical care.
As a result, their conditions may deteriorate, secondary health problems
may arise, and care may be more protracted, intensive and expensive. All
too often, institution-based long-term care may become necessary, with a
current estimated cost of \$45 billion for persons with disability. A
customer-driven, individualized system of community-based care that is
responsive to individual needs has been demonstrated to provide better,
less expensive care.

The goal is to redirect Medicaid financing from institution-based to
improve health care outcomes for women with disabilities, a goal being
supported by new community-based Medicaid-supported initiatives
implemented in response to President Bush's New Freedom Initiative.

**Objectives:**

-   Develop new models through a Centers for Medicare and Medicaid
    Services (CMS) demonstration project to learn how to change the
    system to make it more cost effective while maintaining independence
    and self-directed health management within the health care delivery
    system.

-   Reduce existing inequities in reimbursement for medical
    professionals' time, case management, and medical and technological
    equipment.

-   Reduce the reimbursement paperwork burden for providers.

**Key Stakeholders:**

-   Women with disabilities and their families

-   Health care providers

-   CMS and other providers of healthcare benefits

-   Federal and State Medicaid agencies

-   Health departments

-   Community-based service providers

-   Foundations

-   Employers

**Needed Resources:**

-   Enhanced federal support

-   Non-governmental funding supports (e.g. foundations)

-   Public and Private Partnerships and collaborations

-   Participants for demonstration project (entities to apply in a
    State)

**Next Steps:**

-   Develop workgroup and establish a timeline

-   Conduct research review on public and private financing issues

-   Develop a concept paper

-   Explore with CMS interest in supporting a demonstration project

-   Raise consciousness and trust relationships with advocates,
    legislators, private and public, foundations, academia, and
    constituents

**Health Promotion**

Gaps exist in the current body of knowledge related to the health care
needs of women with disabilities. Current data sets, such as that
maintained by the National Center for Medical Rehabilitation Research,
contain little data specifically focused on women with disabilities.
There is a need to address the health issues of all women with
disabilities, including those with cognitive, sensory, and physical
disabilities. A few organizations, such as the Association of University
Centers on Disabilities, Alta Bates Summit Medical Center, among others
have conducted research on women with disabilities, but more information
is needed.

The short-term goal is to produce a White Paper on Health Promotion for
Women with Disabilities across the Lifespan. This document would address
the current state of health promotion and needs of women with
disabilities and would be distributed to health care providers,
policymakers, government agencies, and consumer groups.

**Objectives:**

-   Establish white paper workgroup---with representatives from all
    stakeholder organizations and offices.

-   Convene a workgroup meeting within 2 months of the project
    initiation to identify roles in researching and writing the White
    Paper.

-   Write, revise, and seek approval for publication of the White Paper
    within 6 months of the implementation of the work group.

**Key Stakeholders:**

-   Professional organizations -- American Medical Association, American
    Academy of Pediatrics, National Medical Association, American
    Academy of Physical Medicine and Rehabilitation, National
    Association of Community Health Centers, Association of Women's
    Health, Obstetric, and Neonatal Nurses, American Public Health
    Association, American Spinal Injury Association, Association of
    Academic Physiatrists

-   Women with disabilities and their families

-   Disability and women's health policy experts

-   Consumer groups---Multiple Sclerosis groups, American Association of
    People with Disabilities, ARC, United Cerebral Palsy, Down Syndrome
    Association, National Spinal Cord Association, Brain Injury
    Association , Through the Looking Glass, AARP, National Health
    Council, United Spinal Association

-   Federal Agencies: National Council on Disability, HHS Office on
    Disability and Office on Women's Health, National Institute on
    Disability and Rehabilitation Research, US Department of Education

**Needed Resources:**

-   Interdepartmental and interagency partnerships

-   Champion/spokesperson

**Next Steps:**

-   Identify a group to take ownership of the development of the White
    Paper, using channels already established by the HHS Office on
    Disability and Office on Women's Health interagency agreement.

-   Delineate the mechanisms under which the White Paper will be
    developed, reviewed, edited, and, ultimately, cleared and published,
    including such matters as funding and editorial responsibility.

-   Establish a timeline for development and ultimate publication of the
    White Paper.

**Provider Education**

A broad curriculum for undergraduate, graduate, or continuing medical or
for allied health education for disabilities issues is not currently
available. Practitioners express a lack of confidence in their ability
to treat women with disabilities. There are a variety of local
curriculum programs, and there is a national curriculum program
addressing women's health issues more broadly. Communication is limited
among providers and across disciplines on disabilities issues. In
mid-2005, the Surgeon General will be issuing a Call to Action on the
health and wellness needs of persons with disabilities which will
enhance interest in this issue area.

The goal is for all health care provider training programs, including
continuing education programs, to address the care of women with
disabilities in areas of competencies involving attitudes, knowledge,
and skills.

**Objectives:**

-   Establish a resource center through a competitive process similar to
    that used to select the Research and Training Centers of the HHS
    Office on Women's Health Centers for Excellence. The resource center
    would collect and disseminate all existing educational resources for
    all types of providers and for all levels of training.

-   Obtain support from relevant groups by writing journal articles,
    making convention presentations, etc. All participants in this
    meeting will participate. Take advantage of the Surgeon General's
    Call to Action as a springboard to generate interest.

-   Seek public and private resources to advance curricula development
    with the aim of modifying provider behavior and improving safety and
    outcomes.

**Key Stakeholders:**

-   Women with disabilities and their families

-   Independent living centers

-   Health educators across the range of disciplines, and across levels
    of education

-   Professional organizations -- key physician, nurse, OT/PT
    associations

-   Hospital associations, practice management companies

-   Risk managers and malpractice insurance carriers

-   Women's groups

-   Disability and women's health experts

-   Joint Accreditation Commission for Healthcare Organizations,
    National Committee for Quality Assurance and other quality standard
    setters

**Needed Resources:**

-   Web site as locus for materials dissemination

-   Journal articles, conference presentations

-   Support from professional organizations

-   Support from public and private entities

-   A leader of the effort to coordinate the group

**Next Steps:**

-   Kristi Kirschner (Rehabilitation Institute of Chicago) will
    summarize current resources and forward that information to the
    National Research Center for Women and Families and the HHS Office
    on Disability for circulation to conference participants to begin
    the process of assembling existing resources.

-   Establish a formalized work group to lead this effort.

-   Establish a timeline.

**Appendices**

**Appendix A: Presentations**

Sharman Word Dennis, MEd

Kristi Kirschner, MD

Florita Maiki, MA

Judith Panko-Reis, MA, MS

Jennifer Potter, MD

JoAnn Thierry, PhD, MA

Margaret Turk, M.D.

![](media/image1.wmf)

**Appendix B: Presenter biographies**

**Sharman Word Dennis, MEd**, the founder and CEO of ROSE, Inc, has
worked with youth for more than thirty years. She has completed
postgraduate studies in special education from George Washington
University, a masters of arts in education, specializing in special
education from George Washington University, and a bachelor of arts in
education from Emmanuel College in Boston, Massachusetts. Ms. Dennis is
considered one of the foremost experts on persons with Developmental
Disabilities, Mental Retardation, other special needs and EPSDT. She has
served as an adjunct professor at Howard University in the School of
Education, the University of the District of Columbia and George
Washington University.

Ms. Dennis was instrumental in developing and providing oversight for
the DC Early Intervention Program for infants and toddlers with special
needs. She has served on numerous committees in the District of Columbia
that focus on the needs of persons with disabilities.

Ms. Dennis has managed programs with limited resources as well as
programs with million dollar budgets. She is knowledgeable of barriers
to institutional growth and expansion. Much of her work involves the
development of needs assessments and evaluative processes. She has years
of experience in facilitating groups and managing interpersonal
relationships by bringing together key stakeholders and being aware of
turf issues. She has conducted outreach and training activities for the
federal government, District government and private sector.

Ms. Dennis' favorite enjoyments are working with children and training
about the needs of children and families and to support agencies in
serving the needs of children in a cost effective manner.

**The Honorable Margaret J. Giannini, MD, FAAP** was appointed in 2002,
as Director of the Health and Human Services Office on Disability by
Secretary Tommy G. Thompson. She serves as advisor to the Secretary on
HHS activities relating to disabilities. Prior, Dr. Giannini was
appointed by President George W. Bush as the Principal Deputy Assistant
Secretary for Aging at the Department of Health and Human Services. From
1981-1992, Dr. Giannini was Deputy Assistant Chief Medical Director for
Rehabilitation and Prosthetics at the Department of Veterans Affairs.
Her work focused on technology transfer and assistive technology
involving all disabilities. In 1979, President Jimmy Carter appointed
Dr. Giannini as the first Director of the National Institute of
Handicapped Research. Dr. Giannini, in 1950, was the first to create the
largest facility for mentally retarded and the developmentally disabled
for all ages and etiologies in the United States and the world, which
became the first University Center of Excellence on Developmental
Disabilities.

Dr. Giannini is the recipient of many national and international awards
from various organizations. She was saluted by the Association for
Pediatric Research; selected \"Woman of the Year\" for Achievement in
Medicine and \"Woman-Doer\" by President and Mrs. Lyndon B. Johnson;
received the Wyeth Medical Achievement Award; the Seal of the Inner
London Education Authority for Contributions in the Field of Mental
Retardation at the House of Parliament London; and the Governor Hugh
Carey Citation for Leadership and Medical Contributions to the State of
New York; presented the First Honorary Degree by Mercy College Doctor of
Humane Letters; the Meritorious Honor Award in Mental Retardation and
awarded the Key to the City of Bologna, Italy; received the Bronze Medal
Award by the American Academy of Pediatrics; the National
Italian-American Foundation Award for Distinguished Achievements in
Science and Medicine; \"Recognition Plaque\' from the City of San
Francisco; Seton Award from Seton Hall College, Pittsburgh, PA; the
First Presidential Award for Design Excellence from President Reagan;
the N. Neal Pike Award for Service to the handicapped from Boston
University; the Isabelle and Leonard H. Goldenson Award for Technology
Application to Cerebral Palsy; President Reagan\'s Distinguished Service
Award, Committee on Employment of the Handicapped; Silver helmet Award
by AMVETS; is in the New York Hall of Fame (AHRC, \'98); and was honored
by the naming of the \"Hon. Margaret J. Giannini, M.D. Physical
Rehabilitation Pavilion\" in 1997 at Westchester Special School, N.Y.
First International Leadership Scholars Award by the University of
Maryland, Baltimore, Maryland in recognition for \"International
Programs in Rehabilitation and Disability.\"

Dr. Giannini has served on numerous national and international boards
and chaired more than 61 international conferences on rehabilitation and
developmental disabilities. She has served for many years as Chair of
the Board of Trustees, the American University of Rome, Italy. She has
published extensively and lectured nationally and internationally. Dr.
Giannini has most recently edited \"Behavioral Neurology in the
Elderly,\" December 2001. She is also a Member of Institute of Medicine.

**Wanda Jones, DrPH**, is Deputy Assistant Secretary for Health
(Women\'s Health) in the U.S. Department of Health and Human Services
and the Director of the Office on Women\'s Health. Since her selection
in 1998, Dr. Jones has focused her efforts on eliminating health
disparities for women through a variety of programs and initiatives,
including the

HYPERLINK \"http://www.4woman.gov/coe/index.htm\"

National Centers of Excellence in Women\'s Health
([www.4woman/gov/coe/index.htm](http://www.4woman/gov/coe/index.htm)),
the National Community Centers of Excellence in Women\'s Health
([www.4woman.gov/owh/cCOE/index.htm](http://www.4woman.gov/owh/cCOE/index.htm)),
the National Women\'s Health Information Center
([www.4woman.gov/index.htm](http://www.4woman.gov/index.htm)),
(1-800-994-WOMAN or TDD: 1-888-220-5446), and the Panel of Experts on
Minority Women\'s Health
([www.4woman/gov/owh/minority.htm](http://www.4woman/gov/owh/minority.htm)
).

Dr. Jones actively participates in the Department\'s efforts concerning
violence against women, disabilities, and HIV/AIDS. She supports
women\'s health activities outside Washington, D.C., through women\'s
health coordinators assigned to each of the ten regions of the U.S.
Public Health Service.

Dr. Jones has long been recognized for her leadership on women\'s health
issues in the federal and state public health communities. Prior to her
current position, Dr. Jones was the Associate Director for Women\'s
Health at the Centers for Disease Control and Prevention in Atlanta. A
Penn State graduate in medical technology, she has worked in an inner
city blood bank and its hematology laboratory; in a small town hospital
as its night shift technologist and then as its microbiologist; and for
a state public health laboratory as a laboratory improvement consultant.
She obtained her doctorate in Public Health Laboratory Practice from the
University of North Carolina. Dr. Jones joined CDC in 1987 as an HIV
laboratory trainer. In 1990, she became the Assistant Director for
Science in the Office of the Associate Director for HIV/AIDS, where she
was active in policy issues related to HIV laboratory testing, women and
AIDS, HIV vaccine development and healthcare workers.

**Kristi L. Kirschner, MD**, is an attending physician at the
Rehabilitation Institute of Chicago. She is also the medical director
for the RIC Women with Disabilities Center (formally the Health Resource
Center for Women with Disabilities) and the Director of the Center for
the Study of Disability Ethics at the Rehabilitation Institute of
Chicago.

She received her medical training at the University of Chicago and
completed her residency at the Rehabilitation Institute of Chicago in
1990. She also completed a fellowship in clinical medical ethics at the
MacLean Center for Clinical Medical Ethics at the University of Chicago
in 1995. She has named the Coleman Chair of Rehabilitation Medicine in
February of 1996. This chair supports her work in women's health and
disability as well as disability ethics. She is an associate professor
of Physical Medicine and Rehabilitation and of Medical Ethics and
Humanities at the Northwestern University Feinberg School of Medicine.

**Florita Maiki, MA**, is the Manager of Breast Health Access for Women
with Disabilities (BHAWD) at Alta Bates Summit Medical Center,
Rehabilitation Department in Berkeley California. She has been at BHAWD
almost six years. Prior, she was the Director of the Multiple Sclerosis
Clinic and Research Center at the University of California, San
Francisco. Before that she served as Northern California Service
Director for the National Multiple Sclerosis Society-
Northern California Chapter. Her experience includes 25 years working
with people with disabilities, and in women\'s health in a variety of
capacities such as clinic operations and services, program development
and evaluation, research, public policy and strategic planning.
Florita\'s interest in healthcare and inequity in healthcare access
emerged from her personal and family\'s experience as immigrants. She is
passionate about reducing healthcare disparities through increased
education and access to health services.

**Judith Panko-Reis, MA, MS** Before becoming an advocate for women with
disabilities Judith Panko-Reis earned a B.A. in Philosophy from the
State University of New York in Geneseo. She later earned her Master\'s
degree in Philosophy from the University of Chicago. In 1991, she
graduated from Northwestern University with a Master\'s of Science in
Managerial Communication.

Ms. Panko-Reis became head injured due to a random violent attack while
camping in Hawaii several years ago. Since then, she has become a wife,
mother and the director for the Women with Disabilities Center of the
Rehabilitation Institute of Chicago, the first comprehensive health
center run by and for women and teen girls with disabilities in the
country. In 1993 Ms. Panko-Reis received \$100,000 as a Robert Wood
Johnson Foundation Community Health Leadership Awardee in recognition of
her education and advocacy work on behalf of disabled women\'s health
issues. She is also editor of Resourceful Woman, an award-winning
newsletter written by, for and about women with disabilities. She has
published several articles and book chapters on disabled women\'s
issues, including articles on women and traumatic brain injury. Recently
she published *It Takes More Than Ramps to Solve The Crisis in
Healthcare for People with Disabilities*, a report detailing the
challenges people with disabilities face in their efforts to access
disability competent health services. Throughout the past 15 years, Ms.
Panko-Reis has spoken to local and national audiences about disability,
violence and healthcare issues. She is a trained domestic violence
advocate and has written articles on the subject and conducted trainings
on disability and domestic violence for policymakers and service
providers.

**Jennifer Potter, MD,** is the Director of the Women\'s Health Center
and Director of Women\'s Health Education at Beth Israel Deaconess
Medical Center in Boston. She attended Harvard Medical School and
completed residency in Medicine at the former Deaconess Hospital. She is
recognized nationally for her educational contributions in the field of
women\'s health. Her major interests are teaching trainees how to:
communicate effectively with diverse patients; perform
culturally-sensitive and risk-appropriate breast and pelvic exams;
provide comprehensive breast and reproductive care; and assess women's
satisfaction with their sexual lives and address sexual problems that
are identified.

**JoAnn M. Thierry, PhD, MS, MSW**, is a Behavioral Scientist with the
National Center on Birth Defects and Developmental Disabilities at the
Centers for Disease Control and Prevention (CDC). She is the scientific
advisor for several State Health Departments and research projects
focusing on health promotion and the prevention of secondary conditions.
She is responsible for coordinating the health and wellness activities
for women with disabilities within the Disability and Health program.

Dr. Thierry has been working with people with disabilities for twenty
years. After earning her degree in Psychology at the State University of
New York (SUNY), College at Oswego, she completed a Master's degree in
Counseling and Psychological Services at the same institution, as well
as a Master's degree in Social work at Syracuse University. She worked
for the Onondaga County Health Department in Syracuse for seven years
where she provided both direct and indirect social work services to
persons with disabilities, and initiated programs to prevent secondary
conditions. Ms. Thierry obtained her Ph.D. in Social Work at the
University of Georgia. She joined the CDC in 1991. Her research emphasis
is on health promotion for women with disabilities.

**Margaret A. Turk, MD**, is Professor of Physical Medicine and
Rehabilitation at the State University of New York Upstate Medical
University at Syracuse, with a joint appointment in the Department of
Pediatrics. She is also Medical Director of Rehabilitation Services at
St. Camillus Health and Rehabilitation Center. Dr. Turk serves as a
Director of the American Board of Physical Medicine and Rehabilitation
and as a member of the American Board of Medical Specialties Maintenance
of Certification Task Force. In addition to her clinical and
administrative responsibilities, Dr. Turk is involved in rehabilitation
research and has been funded by CDC over a 10 year period for projects
related to secondary conditions of and health promotion for persons with
disabilities. Her publications and national and international
presentations have been on pediatric rehabilitation, pediatric
electrodiagnosis, tone management, adults with cerebral palsy, secondary
conditions, health promotion in disability, and the health of women with
disabilities. She participates with the NYS DOH Disability Prevention
Program Working Group on Secondary Conditions, which she co-chairs. She
received The Ohio State University College of Medicine & Public Health
Alumnae Achievement Award in 2000, and the United Cerebral Palsy
Research and Educational Foundation Isabelle and Leonard Goldenson
Technology and Rehabilitation Award in 2004. She has served on the
Medical Rehabilitation Research Subcommittee, NICHD, NIH, and was
Chairman for two years. She has served on a variety of program planning
committees and study groups for CDC, NIH, and NIDRR, and participated in
the Institute of Medicine report on rehabilitation science and
engineering, Enabling America.

**Diana Zuckerman, PhD**, is the President of the National Research
Center for Women & Families, a nonpartisan, nonprofit organization that
uses research information to advocate for programs and policies that
will improve the health and safety of women, children, and families.

Dr. Zuckerman received her PhD in psychology from Ohio State University
and was a post-doctoral fellow in epidemiology and public health at Yale
Medical School. She started her career as a faculty member at Vassar
College, then at Yale University, and then was a study director at
Harvard, where she conducted research on the life goals and self-images
of women at seven liberal arts colleges.

For ten years, Dr. Zuckerman worked as a Congressional staffer in the
U.S. House of Representatives, working for the Congressional
subcommittee that oversees the U.S. Department of Health and Human
Services and Department of Education. She was responsible for more than
a dozen Congressional investigations and hearings on health, mental
health, and other social policy issues. In 1993, she became Director of
Policy, Planning, and Legislation for the Center for Mental Health
Services of the U.S. Public Health Service. She left to direct the
health staff for the U.S. Senate Committee on Veterans Affairs, chaired
by Sen. Jay Rockefeller.

After leaving the Senate in 1995, Dr. Zuckerman spent a year as a senior
policy adviser in the White House, at the Office of Science and
Technology Policy. Since leaving the White House, she has served in
leadership positions at non-profit organizations, and has been president
of the National Research Center for Women & Families since 1999. (Until
recently, the Center was named the National Center for Policy Research
for Women & Families). She is the author of Blind Adults in America:
Their Lives and Challenges, a report based on the only comprehensive
study of legally blind adults in the U.S., which was released at a
Congressional policy forum in 2004.

Dr. Zuckerman is a nationally recognized expert on health issues, and
has appeared on ABC news, CBS news, NBC news, CNN, Fox News, public
television, 20/20, and National Public Radio. She has been quoted in The
New York Times, Washington Post, Los Angeles Times, Boston Globe, USA
Today, Detroit Free Press, Washington Times, New York Daily News,
Newsweek, Time, U.S. News and World Report, and many other newspapers
and radio programs. In addition, she writes a monthly research column
for Youth Today. She is the author of four books and dozens of articles
in academic journals and national newspapers.

**Appendix C: Participant list**

Angela Ablorh-Odjidja, MHS

Senior Analyst

National Association of County and City Health Officials

1100 17th St. 2nd Floor

Washignton, DC 20036

\(p\) 202-783-5550, ext. 262/(f) 202-783-1583

aablorh@naccho.org

Mindy Aisen, MD

Director Rehabilitation Research and Development

Veteran\'s Affairs, Office of Rehabilitation Research and Development

810 Vermont Avenue, NW Mail Code 12

Washington, DC 20420

\(p\) 202-254-0255/(f) 202-254-0473

mindy.aisen@va.gov

Jameta Barlow, MPH

Program Analyst

Office on Disability, HHS

Hubert H. Humphrey Bldg.

637 D 200 Independence Ave. SW

Washington, DC 20201

\(p\) 202.205.1004/(f) 202-260-3053

jameta.barlow@hhs.gov

Helena Berger

Chief Operating Officer

American Association of People with Disabilities

1629 K St. NW Suite 503

Washington, DC 20006

\(p\) 202-457-0046/(f) 202-457-0473

hberger952@aol.com

Laura Blum

Associate Director Federal Relations

Joint Commission on Accreditation of Healthcare Organizations

601 13th Street NW Suite 1150N

Washington, DC 20005

\(p\) 202 783 6655/(f) 202-783-6888

lblum@jcaho.org

Veronica Clarke-Tasker, PhD, RN, MBA

Associate Professor Division of Nursing

Howard University and Black Nurses Association of Greater Washington, DC

501 Bryan Street NW

Washington, DC 20059

\(p\) 202-806-5083/(f)

vclarke-tasker@howard.edu

Rosaly Correa, MD, MSc, PhD

Senior Advisor on Women\'s Health

Agency for Healthcare Research and Quality, HHS

John Eisenberg Building

540 Gaither Road

Rockville, MD 20850

\(p\) 301-427-1550/(f) 301-427-1562

rcorrea@ahrq.gov

Judith Cranford

Executive Director

National Osteoporosis Foundation

1232 22nd Street N.W.

Washington, DC 20037

\(p\) 202-721-6362/(f) 202-463-0260

judith@NOF.org

Jennifer Croft

Civil Rights and EEO Specialist

Office of Equal Employment Opportunity and Diversity Management, FDA,
HHS

5600 Fishers Lane

Rockville, MD 20857

\(p\) 301-827-4841/(f) 301-827-9675

<jcroft@oc.fda.gov>

Sharman Word Dennis, Med

Chief Executive Officer

Rose, Inc.

\(p\) 202-487-0939/(f)

ROSEINC2002@aol.com

Eileen Elias, MEd

Deputy Director

Office on Disability, HHS

Hubert H. Humphrey Bldg.

637 D 200 Independence Ave. SW

Washington, DC 20201

\(p\) 202-205-1104/(f) 202-260-3053

eileen.elias@hhs.gov

Joanne Finegan, MSA, CTRS

Chief Executive Officer

CARF, ReMed

16 Industrial Blvd. Suite 203

Paoli, PA 19301

\(p\) 484-595-9300/(f) 484-595-0377

jfinegan@remed.com

Bruce Gans, MD

President

American Academy of Physical Medicine and Rehabilitation

One IBM Plaza Suite 2500

Chicago, IL 60611

\(p\) 312-464-9700/(f) 312-464-0227

bgans@kessler-rehab.com

Margaret Giannini, MD, FAAP

Director HHS Office on Disabilities

Office on Disability, HHS

Hubert H. Humphrey Bldg.

637 D 200 Independence Ave. SW

Washington, DC 20201

\(p\) 202-205-1016/(f) 202-260-3053

margaret.giannini@hhs.gov

Mary Jo Goolsby, EdD

Director Research and Education

American Academy of Nurse Practitioners

3421 Walton Way

Augusta, GA 30909

\(p\) 512-422-4262, ext. 5903/(f) 512-442-6469

mjgoolsby@aanp.org

Sandra Haldane

Principal Nurse Consultant

Indian Health Service, HHS

801 Thompson Ave. Suite 300

Rockville, MD 20852

\(p\) 301-443-1840/(f) 301-594-6135

Sandra.haldane@ihs.gov

Jaye Hefner, MD

Instructor of Medicine

Harvard Medical School & Beth Israel Deaconess Medical Center

Healthcare Associates

1st Floor Atrium Suite 300 Brookline Ave.

Boston, MA 02215

\(p\) 617-667-6393 or 978-580-7721/(f) 617-667-6405

jhefner@bidmc.harvard.edu

Cassandra Henderson, MD

Chief of Maternal Fetal Medicine

National Medical Association, Our Lady of Mercy Medical Center

600 East 233rd Street 5th floor Dept. OB/Gyn

Bronx, NY 10466

\(p\) 718 920-9647/(f) 718-920-1775

cehenderson@mic-mhra.org

Sheldon Horowitz, MD, EdD

Associate Vice President

American Board of Medical Specialties

1007 Church St. Suite 404

Evanston, IL 60201

\(p\) 847-491-9091, ext. 3018/(f) 847-328-3596

shorowitz@abms.org

Amie Jackson, MD

Professor and Chairman Physical Medicine and Rehabilitation

University of Alabama at Birmingham, School of Medicine

1717 6th Avenue South Room 190

Birmingham, AL 35233

\(p\) 205-934-3330/(f) 205-975-9754

jacksona@uab.edu

Wanda Jones, DrPH

Deputy Assistant Secretary for Women\'s Health

Office on Women\'s Health, HHS

Hubert H. Humphrey Bldg.

712E 200 Independence Avenue, SW

Washington, DC 20201

\(p\) 202-690-7650/(f) 202-205-2631

<WJones@OSOPHS.DHHS.GOV>

Sameta \"Sam\" Kemp

Vice President of Development and Marketing

Lupus Foundation of America

2000 L St., NW Suite 710

Washington, DC 20036

\(p\) 202-349-1155, ext.143/(f) 202-349-1156

Kemp@lupus.org

Kristi Kirschner, MD

Medical Director Health Resource Center for Women with Disabilities
(HRCWD)

Rehabilitation Institute of Chicago

345 E. Superior St. Suite 1122

Chicago, IL 60611

\(p\) 312-238-4744/(f) 312-238-4516

kkirschner@ric.org

Marie-Michèle Léger, MPH, PA-C

Director Clinical and International Affairs

American Academy of Physicians Assistants

950 North Washington St.

Alexandria, VA 22314

\(p\) 703-836-2272, ext. 3104/(f) 703-684-1924

mleger@aapa.org

Madeleine Levin, MPH

Health Policy Analyst

National Research Center for Women & Families

1901 Pennsylvania Ave. NW Suite 901

Washington, DC 20006

\(p\) 202-223-4000/(f) 202-223-4242

ml@center4research.org

Florita Maiki, MA

Manager Rehabilitation Department

Alta Bates Summit Medical Center

Breast Health Access For Women with Disabilities

2001 Dwight Way #2350 2nd floor

Berkeley, CA 94704

\(p\) 510-204-4866/(f) 510-204-5892

MaikiF@sutterhealth.org

Marian McCartney, CNM, BSN, FACNM

Director Professional Services

American College of Nurse Midwives

8403 Colesville Rd Suite 1550

Silver Spring, MD 20910

\(p\) 240-485-1800/(f) 240-485-1818

mmcartney@acnm.org

Shelia Newman

President

New Editions Consulting, Inc.

5203 Leesburg Pike Suite 307

Falls Church, VA 22041

\(p\) 703-442-8719/(f) 703-448-1928

snewman@neweditions.net

Kate Nicholson, JD

Attorney Advisor Disability Rights Section

Disability Rights Section, DOJ

1425 New York Ave NW 4th Floor

Washington, DC 20005

\(p\) 202-514-0547/(f) 202-307-1198

katherine.m.nicholson2@usdoj.gov

Margaret Nygren, EdD

Technical Assistance Director

Association of University Centers on Disabilities

1010 Wayne Avenue Suite 920

Silver Springs, MD 20910

\(p\) 301-588-8252/(f) 301-588-2842

mnygren@aucd.org

Marcy Oppenheimer, MD, JD

Senior Health Policy Fellow

National Research Center for Women & Families

1901 Pennsylvania Ave. NW Suite 901

Washington, DC 20006

\(p\) 202-223-4000/(f) 202-223-4242

mo@center4research.org

Judith Panko-Reis, MA, MS

Director

Women with Disabilities Center, Rehabilitation Institute of Chicago

345 E. Superior St.

Chicago, IL 60611

\(p\) 312-238-1051/(f) 312-238-1205

jreis@ric.org

Anne Marie Pecht, MPP, JD

Senior Attorney Attorney

Disability Rights Section, DOJ

950 Pennsylvania Ave. NW

Washington, DC 20005

\(p\) 202-307-2891/(f) 202-305-9775

anne.m.pecht@usdoj.gov

Jennifer Potter, MD

Director Women\'s Health Center,Women\'s Health Education

Beth Israel Deaconess Medical Center/APGO Women\'s Health Learning
Competencies

330 Brookline Ave.

Boston, MA 02215

\(p\) 617-667-9600/(f) 617-667-6405

jpotter@bidmc.harvard.edu

Marion Primas, PhD, MS

Senior Public Health Advisor Aging and Women\'s Health

Bureau of Primary Health Care, HRSA, HHS

4350 East-West Hwy 9th Floor

Bethesda, MD 20814

\(p\) 301-594-3737/(f) 301-443-0248

mprimas@hrsa.gov

Lauren Raskin Ramos, MPH

Senior Director Maternal and Child Health

Association of State and Territorial Health Officials

1275 K Street NW Suite 800

Washington, DC 20005

\(p\) 202-371-9090/(f) 202-371-9797

lraskin@astho.org

Melinda Ray, RN

Director, Public Affairs

Association of Women\'s Health, Obstetric, and Neonatal Nurses

2000 L St. NW Suite 740

Washington, DC 20036

\(p\) 202-261-2405/(f) 202-728-0575

mray@awhonn.org

Judi Rogers, OTR/L

Pregnancy and Birthing Specialist

Through the Looking Glass

2198 Sixth St. Suite 100

Berkeley, CA 94710

\(p\) 510-848-1112, ext.111/(f) 510-848-4445

Judi_rogers@lookingglass.org

Marcie Roth

Executive Director and CEO

National Association of Spinal Cord Injuries

6701 Democracy Blvd. Suite 300-9

Bethesda, MD 20817

\(p\) 301-214-4006/(f) 301-881-9817

mroth@spinalcord.org

Theresa San Agustin, MD

Program Officer Co-Chair, ICDR Subcommittee on Medical Rehabilitation

National Institute on Disability and Rehabilitation Research, US
Department of Education

400 Maryland Ave. SW PCP#6072

Washington, DC 20202

\(p\) 202-245-7516/(f) 202-245-7323

Theresa.SanAgustin@ed.gov

Laura Sessums, MD, JD

Society of General Internal Medicine

5081 Lowell St. NW

Washington, DC 20016

\(p\) 202-782-0298/(f) 202-782-9072

Laura.Sessums@na.amedd.army.mil

Jennifer Sheehy Keller

Acting Deputy Director

National Institute on Disability and Rehabilitation Research, US
Department of Education

550 12th St. SW Room 6059

Washington, DC 20202

\(p\) 202-245-7520/(f) 202-245-7643

jennifer.sheehy@ed.gov

Deborah Smith, MD, MPH

Fellow

American College of Obstetricians and Gynecologists

1445 Crestridge Dr.

Silver Spring, MD 20910

\(p\) 202-234-0831/(f) 301-589-2135

dmfsmith@earthlink.net

Dennis Smith, MPA

Director

CMS, Center for Medicaid and State Operations, HHS

7500 Security Blvd MS S2-26-12

Baltimore, MD 21244

\(p\) 410-786-3870/(f)

DSmith2@cms.gov

Chris Spain

Director Research, Planning, and Special Projects

President\'s Council on Physical Fitness & Sports, HHS

Hubert H. Humphrey Bldg.

738 H 200 Independence Ave SW

Washington, DC 20201

\(p\) 202-690-5148/(f) 202-690-5211

cspain@osophs.dhhs.gov

Sue Swenson, MA, MBA

Assistant Executive Director

Chapter, Membership and Program Services

The Arc of the United States

1010 Wayne Ave. Suite 650

Silver Springs, MD 20910

\(p\) 301-565-5478/(f)

swenson@thearc.org

JoAnn Thierry, PhD, MSW

Behavioral Scientist

National Center on Birth Defects and Developmental Disabilities, Centers
for Disease Control and Prevention

Mail-Stop E-88

1600 Clifton Rd.

Atlanta, GA 30333

\(p\) 404-498-3022/(f) 404-498-3050

Jxt4@cdc.gov

Steven Tingus, MS, C.Phil

Director

National Institute on Disability and Rehabilitation Research, US
Department of Education

550 12th St. SW Room 6056

Washington, DC 20202

\(p\) 202-245-7640/(f) 202-245-7630

steven.tingus@ed.gov

Tom Tonniges, MD, FAAP

Director Department of Community Pediatrics

American Academy of Pediatrics

141 Northwest Point Blvd.

Elk Grove Village, IL 60007

\(p\) 847-434-4723/(f) 847-434-8000

ttonniges@aap.org

Margaret Turk, MD

Professor Physical Medicine and Rehabilitation

Dept. of Physical Medicine and Rehabilitation, SUNY Upstate Medical
Center

750 East Adams St.

Syracuse, NY 13210

\(p\) 315-464-5820/(f) 315-464-8699

turkm@upstate.edu

Sunny Yoder

Director of Resident Affairs

Association of American Medical Colleges

2450 N. Street NW

Washington, DC 20037

\(p\) 202-828-0497/(f) 202-828-4792

syoder@aamc.org

Diana Zuckerman, PhD

President

National Research Center for Women & Families

1901 Pennsylvania Ave. NW Suite 901

Washington, DC 20006

\(p\) 202-223-4000/(f) 202-223-4242

dz@center4research.org

**Appendix C: Work Group Members**

**[Provider Education Work Group]{.underline}**

Facilitator: Margaret Turk, MD, SUNY Upstate Medical Center

This group will focus on how to ensure providers are equipped to serve
patients with disabilities, understand their health care needs,
understand the ADA, and learn about community resources.

  ----- --------------- --------------- ---------------------------------------------
  Ms.   Helena          Berger          American Association of People with
                                        Disabilities

  Dr.   Veronica        Clarke-Tasker   Black Nurses Association of Greater
                                        Washington, DC

  Dr.   Sheldon         Horowitz        American Board of Medical Specialties

  Dr.   Kristi          Kirschner       Rehabilitation Institute of Chicago

  Ms.   Marie-Michèle   Léger           American Academy of Physicians Assistants

  Dr.   Jennifer        Potter          Beth Israel Deaconess Medical Center/APGO
                                        Women\'s Health Learning Competencies

  Ms.   Melinda         Ray             Association of Women\'s Health, Obstetric,
                                        and Neonatal Nurses

  Ms.   Judi            Rogers          Through the Looking Glass

  Dr.   Laura           Sessums         Society of General Internal Medicine

  Ms.   Chris           Spain           President\'s Council on Physical Fitness &
                                        Sports, HHS

  Dr.   Margaret        Turk            Dept. of Physical Medicine and
                                        Rehabilitation, SUNY Upstate Medical Center

  Ms.   Sunny           Yoder           Association of American Medical Colleges
  ----- --------------- --------------- ---------------------------------------------

**[Health Promotion Work Group]{.underline}**

Facilitator: JoAnn Thierry, PhD, Centers for Disease Control and
Prevention

This group will focus on identifying challenges to promoting health and
wellness for women with disabilities, including consumer and provider
attitudes (e.g., knowledge, personal choices, and life style);
environmental barriers; health communication; and community support.

  ----- ----------- ----------- -------------------------------------------
  Ms.   Laura       Blum        Joint Commission on Accreditation of
                                Healthcare Organizations

  Ms.   Judith      Cranford    National Osteoporosis Foundation

  Dr.   Bruce       Gans        American Academy of Physical Medicine and
                                Rehabilitation

  Dr.   Mary Jo     Goolsby     American Academy of Nurse Practitioners

  Ms.   Sandra      Haldane     Indian Health Service, HHS

  Dr.   Amie        Jackson     University of Alabama at Birmingham, School
                                of Medicine

  Dr.   Wanda       Jones       Office on Women\'s Health, HHS

  Ms.   Sameta      Kemp        Lupus Foundation of America
        \"Sam\"                 

  Dr.   Marion      Primas      Bureau of Primary Health Care, HRSA, HHS

  Ms.   Jennifer    Sheehy      National Institute on Disability and
                    Keller      Rehabilitation Research, US Department of
                                Education

  Dr.   JoAnn       Thierry     National Center on Birth Defects and
                                Developmental Disabilities, Centers for
                                Disease Control and Prevention
  ----- ----------- ----------- -------------------------------------------

**[ADA and Access Issues Work Group]{.underline}**

Facilitator: Judith Panko-Reis, MA, MS Rehabilitation Institute of
Chicago

This group will focus on accessibility of medical equipment and medical
offices; accessibility needs assessments; and transportation.

  ----- ---------- ------------ ---------------------------------------------
  Dr.   Mindy      Aisen        Veteran\'s Affairs, Office of Rehabilitation
                                Research and Development

  Ms.   Jennifer   Croft        US Food and Drug Administration

  Ms.   Joanne     Finegan      CARF, ReMed

  Dr.   Jaye       Hefner       Harvard Medical School & Beth Israel
                                Deaconess Medical Center

  Ms.   Flora      Maiki        Breast Health Access For Women with
                                Disabilities

  Ms.   Kate       Nicholson    Department of Justice, Disability Rights
                                Section

  Ms.   Margaret   Nygren       Association of University Centers on
                                Disabilities

  Ms.   Judith     Panko-Reis   Women with Disabilities Center,
                                Rehabilitation Institute of Chicago

  Ms.   Anne Marie Pecht        US Department of Justice, Disability Rights
                                Section

  Ms.   Lauren     Raskin Ramos Association of State and Territorial Health
                                Officials

  Mr.   Steven     Tingus       National Institute on Disability and
                                Rehabilitation Research, US Department of
                                Education
  ----- ---------- ------------ ---------------------------------------------

**[Financing Issues Work Group]{.underline}**

Co-Facilitators: Margaret Giannini, MD, FAAP, Office on Disability, HHS
and Dennis Smith, MPA, CMS, Center for Medicaid and State Operations,
HHS

This group will focus on reimbursement rates for longer visits; and
insurance issues.

  ----- ----------- ---------------- ----------------------------------------------
  Ms.   Angela      Ablorh-Odjidja   National Association of County and City Health
                                     Officials

  Dr.   Rosaly      Correa           Agency for Healthcare Research and Quality,
                                     HHS

  Dr.   Margaret    Giannini         Office on Disability, HHS

  Dr.   Cassandra   Henderson        National Medical Association, Our Lady of
                                     Mercy Medical Center

  Ms.   Marian      McCartney        American College of Nurse Midwives

  Ms.   Shelia      Newman           New Editions Consulting, Inc.

  Ms.   Marcie      Roth             National Association of Spinal Cord Injuries

  Dr.   Theresa     San Agustin      National Institute on Disability and
                                     Rehabilitation Research, US Department of
                                     Education

  Dr.   Deborah     Smith            American College of Obstetricians and
                                     Gynecologists

  Mr.   Dennis      Smith            CMS, Center for Medicaid and State Operations,
                                     HHS

  Ms.   Sue         Swenson          The Arc of the United States

  Dr.   Tom         Tonniges         American Academy of Pediatrics

  Dr.   Diana       Zuckerman        National Research Center for Women & Families
  ----- ----------- ---------------- ----------------------------------------------