**National Leadership Summit on Eliminating Racial and Ethnic
Disparities in Health**

**Pre-Conference**

**Addressing the Healthcare and Wellness Needs of\
Women of Color with Disabilities**

***"Minding the Gap: Access, Availability, and Services"***

**A Summary of Pre-Conference Proceedings**

**January 2006**

**Washington, DC**

![](media/image1.png){width="2.688888888888889in"
height="2.4618055555555554in"}

**Office on Disability**

**Office on Women's Health**

**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.

**Table of Contents**

[I. Introduction 1](#i.-introduction)

[II. Setting the Framework for the Action Plan: Presentation Summaries
4](#ii.-setting-the-framework-for-the-action-plan-presentation-summaries)

[Mind](#minding-the-gap-access-availability-and-services)ing the Gap:
Acces, Availability, and Services

[Gerlene Ross, Ph.D*.* 7](#gerlene-ross-ph.d.)

[Optimal](#optimal-healthcare-for-women-of-color-with-disabilities)
Healthcare for Women of Color with Disabilities

[Jaye Hefner, M.D*.* 10](#jaye-hefner-m.d.)

[Catalyzing](#catalyzing-quality-improvements-in-healthcare-services-for-women-of-color-with-disability)
Quality Improvements in Healthcare Services for Women of Color

with Disability

[Rosaly Correa de-Araujo, M.D., MSc, Ph.D.
14](#rosaly-correa-de-araujo-m.d.-msc-ph.d.)

[Clinical](#clinical-issues-in-delivering-rehabilitation-services-to-the-asian-chinese-community-in-new-york-city-chinatown)
Issues in Delivering Rehabilitation Services to the Asian Chinese

Community in New York City Chinatown

[Victoria Zhang, M.D. 18](#victoria-zhang-m.d.)

[Addressing](#addressing-the-healthcare-and-wellness-issues-of-women-of-color-with-disabilities)
the Healthcare and Wellness Issues of Women of Color with Disabilities

[Gloria Johnson-Powell, M.D. 21](#gloria-johnson-powell-m.d.)

[Navigating](#navigating-through-life-on-a-tightrope-a-look-at-american-indian-women-with-disabilities)
through Life on a Tightrope: A Look at American Indian

Women with Disabilities

[Cinda Hughes 23](#cinda-hughes)

[III. Action Plan 26](#iii.-action-plan)

[Workgroup on Access 27](#workgroup-on-access)

[Workgroup on Availability 29](#workgroup-on-availability)

[Workgroup on Services 33](#workgroup-on-services)

[Appendixes](#appendixes)

Appendix A -- Participant List

Appendix B -- Concept Paper

Appendix C -- Pre-Conference Agenda

Appendix D -- Pre-Conference Abstract

Appendix E -- Workgroup Information

Appendix F -- Presenters' Biographies

Appendix G -- PowerPoint Presentations

# I. Introduction

Of the more than estimated 140 million women living in the United States
today, 20 percent or 28 million have disabilities. Some of these women
were born with disabilities, others acquired them. It is important to
recognize that **disability is not an illness** and that many women with
disabilities can, and do, lead healthy lives. However, disabilities
present an array of challenges for women in accessing healthcare
services and programs to maintain good health. Women of color with
disabilities face compounded barriers to health services access as a
result of their gender, race/ethnicity, and disability status.

In this 20th anniversary year of the Office of Minority Health (OMH),
the Office on Disability and the Office on Women's Health (OWH)
partnered with OMH and the American Network of Community Options and
Resources (ANCOR), a nonprofit trade association representing private
providers serving persons with disabilities. Together they sponsored the
"Minding the Gap: Access, Availability, and Services" Pre-Conference to
the U.S. Department of Health and Human Services (HHS) National
Leadership Summit on Eliminating Racial and Ethnic Disparities in
Health. This pre-conference on January, 8, 2006, builds on the December
6, 2004, National Summit: Breaking Down Barriers to Health Care for
Women with Disabilities.

That summit was facilitated by the HHS Office on Disability in
partnership with OWH, the Interagency Committee on Disability Research
at the U.S. Department of Education, and the National Center for Policy
and Research for Women and Families. The 2004 summit explored strategies
to assist healthcare professionals and healthcare facilities to overcome
barriers to the best possible care for women with disabilities. The 2004
pre-conference to that summit addressed these goals specifically as they
pertain to women of color---individuals who are African American,
Hispanic, American Indian/Alaska Native, and Asian American.

In her opening remarks, Dr. Margaret Giannini, M.D., F.A.A.P., Director
of the HHS Office on Disability (OD), presented the goal of the day-long
pre-conference: "To develop action steps toward helping women of color
with disabilities attain improved access to healthcare and wellness
services." National experts provided important, basic information to
support participants in developing this action plan in the areas of
access, availability, and services in three workgroup sessions in the
afternoon.

Dr. Giannini set the tone for the pre-conference by addressing the
healthcare and wellness needs of women of color with disabilities. She
underscored the importance of this meeting by pointing out that about
one in five women has a disability of some kind and that every woman
will experience some kind of disability in her lifetime. Dr. Giannini
described the OD and OWH vision:

-   Women of color with disabilities want out of life the same things
    that all other women do.

-   They want to learn, they want to work, they want to live, they want
    to love, and they want to marry.

-   They want to have a family and be part of the fabric of their
    families and communities.

"We are responsible for helping them to get there," she said and
emphasized that health for all women with disabilities should include:

-   Diverse, compassionate healthcare professionals who are educated in
    caring for persons with disabilities and who provide individualized,
    whole-person care in accessible facilities.

-   Healthcare guided by the best in evidence-based practices.

-   Empowerment of women with disabilities with the tools and knowledge
    to take responsibility and be in control of their own health and
    well-being and to make their own choices.

Dr. Garth Graham, M.D., M.P.H., Deputy Assistant Secretary for Minority
Health, OMH, HHS, emphasized in his opening remarks the importance of
using this anniversary year to reflect on what has been accomplished and
what still needs to be done to eliminate health disparities for racial
and ethnic populations and for all Americans.

Dr. Wanda Jones, Ph.D., Deputy Assistant Secretary for Health, OWH, HHS,
served as the moderator of the pre-conference. She acknowledged Dr.
Giannini and the Office on Disability for their partnership, advocacy,
and recognition of the unique needs of women of color with disabilities.

The pre-conference was attended by 134 participants, including
representatives from provider organizations, legal experts, advocates,
healthcare providers, government officials, and researchers (see
Participant List, Appendix A). The Concept Paper (see Appendix B) and
Pre-Conference Agenda (Appendix C) show the four-step process to develop
a national comprehensive set of recommendations addressing and promoting
the health and wellness of women of color with disabilities. In plenary
sessions, six national experts addressed the challenges within public
and private healthcare systems that often prohibit or discourage women
of color with disabilities from seeking needed care as well as best
practices and evidence-based programs to improve the health and wellness
of this population. The second step of the pre-conference consisted of
three workshop discussions. The presentations served as the catalyst to
support the comprehensive discussion and identification of current
challenges by workgroup participants and the development of recommended
action plans for each of the following areas:

-   Access

-   Availability

-   Services

In the third step participants reconvened into a large group, and
workgroup facilitators presented their respective group's
recommendations to participants. In the fourth and final step, all
pre-conference attendees participated in developing a national
comprehensive action plan based on the workgroups' recommendations.

This report summarizes the presentations provided by the panelists and
sets forth the action plans resulting from the participant brainstorming
sessions. The Concept Paper, agenda, abstract, workgroup information,
presenter biographies, and participant contact information are included
in the Appendixes along with the panelists' PowerPoint presentations.

# II. Setting the Framework for the Action Plan: Presentation Summaries

Six experts provided participants with a comprehensive background on the
barriers and challenges faced by women of color with disabilities in
accessing healthcare and wellness services. They presented statistical
and anecdotal information in describing the current situation,
identified opportunities for improvement, and offered recommendations
for action.

Due to the limited data available on women of color with disabilities,
the primary emphasis of the presentations was on best practices---models
that have not been formally evaluated. The panelists' recommendations
served to support the discussions of the participants in their
respective workgroups on access, availability, and services.

A brief description of each panelist presentation is listed below. The
following section provides summaries of their remarks (biographies of
panelists are found in Appendix E).

**Minding the Gap: Access, Availability, and Services**

**Gerlene Ross, Ph.D.**

*Director*

*Center for Disability and Socioeconomic Policy Studies*

*Howard University Research and Training Center for Access*

Dr. Ross addressed research and service needs of women of color with
disabilities. She discussed the challenges associated with the limited
data for this population and outlined disparities in service delivery
systems. Dr. Ross detailed the importance of culturally competent care.
She proposed a data collection and analysis agenda to provide
evidence-based research upon which appropriate intervention strategies
can be developed and tested.

**Optimal Healthcare for Women of Color with Disabilities**

**Jaye Hefner, M.D.**

*Instructor in Medicine*

*Harvard Medical School*

*Spaulding Rehabilitation Hospital*

*Massachusetts General Hospital*

Dr. Hefner presented the triple oppression facing women of color with
disabilities. She described barriers and disparities that this
population faces in accessing primary care. She identified the
availability of healthcare services for women of color with
disabilities. Dr. Hefner presented interventions, including cultural
competence training, for providers.

**Catalyzing Quality Improvements in Healthcare Services for Women of
Color with Disability**

**Rosaly Correa de-Araujo, M.D., M.Sc., Ph.D.**

*Director*

*Women's Health and Gender-Based Research*

*Agency for Healthcare Research and Quality*

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

Dr. Correa de-Araujo reviewed the current quality of healthcare services
provided to women of color with disabilities related to prevention
(screening and immunizations), timeliness of care received, satisfaction
with care, and communication with healthcare providers. She addressed
disparities for women with disabilities across ethnicities;
opportunities for closing the gaps in quality care; and the role of data
collection, research, and evaluation in affecting healthcare access for
women of color with disabilities.

**Clinical Issues in Delivering Rehabilitation Services to the Asian
Chinese Community in New York City Chinatown**

**Victoria Zhang, M.D.**

*Medical Director*

*Rusk Institute of Rehabilitation Medicine, New York Downtown Hospital*

*Clinical Assistant Professor*

*New York University Rusk Institute of Rehabilitation Medicine*

Dr. Zhang focused on preventive healthcare and rehabilitative services
for women in the Asian population in the New York City Chinatown area.
As a result of a number of factors, elderly Chinese women are at a high
risk for fractures, osteoporosis, and related conditions. The
presentation identified obstacles in reaching this population, in part
because Asian women of this background typically do not hold a Western
model of illness and disease. Challenges encountered by Asian American
women when they do seek healthcare services were also addressed. The
successful, multidisciplinary team outreach education program of the
Rusk Institute was described.

**Addressing the Healthcare and Wellness Issues of Women of Color with
Disabilities**

**Gloria Johnson-Powell, M.D.**

*Director*

*Center for the Study of Cultural Diversity in Healthcare*

*Health Sciences Learning Center*

*University of Wisconsin Medical School*

Dr. Johnson-Powell focused on issues of cultural sensitivity and
cultural competency with special attention given to their impact on
healthcare access, availability, and services for children and female
adolescents of color with disabilities. Her presentation addressed the
impact of navigating the "triple jeopardy" of gender, race, and
disability discrimination in the development of a self-concept and on
healthcare and wellness services. Dr. Johnson-Powell discussed
individual and institutional barriers and challenges, both in the
nonprofit and private sectors. She presented effective culturally
sensitive and competent strategies working in various communities.

**Navigating through Life on a Tightrope: A Look at American Indian
Women with Disabilities**

**Cinda Hughes**

*Legislative Associate*

*National Congress of American Indians*

Giving special attention to Native American women, Ms. Hughes
highlighted current legislation and policy regarding persons with
disabilities and the impact on healthcare access, availability, and
services. She identified legislative gaps contributing to health
disparities among Native American women with disabilities and
opportunities for closing these gaps.

A summary of the presentations follows (presenter PowerPoint slides are
found in Appendix F and can be downloaded from the Office on Disability
website at [www.hhs.gov/od](http://www.hhs.gov/od)). Recommendations
made by the presenters are numbered for ease in reading and do not
represent prioritization in any way.

## Minding the Gap: Access, Availability, and Services

### Gerlene Ross, Ph.D.

*Director*

*Center for Disability and Socioeconomic Policy Studies*

*Howard University Research and Training Center for Access*

***Overview***

The shift in the ethnic, racial, and cultural composition of the U.S.
population has occurred without a concomitant shift in the service
delivery systems, including healthcare and vocational rehabilitation.
The Americans with Disabilities Act and its subsequent amendments have
been designed to make a tremendous difference for all persons with
disabilities.

The barriers for women of color with disabilities in accessing
healthcare and as a part of medical research are long standing. Women's
health research had been focused primarily on the reproductive system
and on women of child-bearing age. Since the early 1990s, women have
been included in clinical trials as mandated by the National Institutes
of Health (NIH) Revitalization Act of 1993. The act requires not only
that minority women be included in research but that the research be
designed to determine differences by gender and race/ethnicity. As a
result, progress is being made in closing the gap in health and
healthcare research for women and minorities. Attention is needed to
ensure this trend continues and enhanced research for women of color
occurs.

Dr. Ross identified a number of disparities.

-   Rates of disability are disproportionate in terms of gender.

    -   More than half of all persons with disabilities are women.

    -   Hispanic women (21.8 percent) and African American women (21.7

> percent) have the highest disability rates of all gender and
> racial/ethnic groups.

-   Disparities in rates of disability are pronounced for minority
    racial/ethnic groups.

```{=html}
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-   African Americans have the highest rate of severe disability of all

> racial/ethnic groups.

-   African American women are more likely to have multiple disabling

> conditions than women in other racial/ethnic groups.

-   Persons with disabilities are less likely to be meaningfully
    employed.

```{=html}
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```
-   Severity of disability impacts employment status as well as the
    quality of

> employment.

-   Where women are less likely to have employment regardless of
    disability status, women with disabilities are at a compounded risk
    for unemployment.

***Barriers and Challenges***

Research is needed in cultural competence, employment, community
participation, and resources. Few researchers are members of minority
populations, and they are not conducting research on minority groups.

Researchers and practitioners are just beginning to understand
biochemical differences across racial and ethnic groups. Such knowledge
is especially important for women of color who may be prescribed any
number of medications related to their disabling conditions. This issue
in minority healthcare is illustrated by the example of the prescription
of psychotropic drugs to African Americans. It has been found that this
class of drugs is absorbed differently by African Americans than by any
other racial/ethnic groups. As a result, African American patients stop
taking these drugs because of the side effects they experience. The drug
makes the patient feel sicker, but when she talks to the doctor, the
doctor labels her as noncompliant and may even increase the dosage.

Physical barriers present challenges as women with disabilities seek
healthcare services. Access to public transportation is a challenge. For
those with mobility impairments, public transportation is not
accessible. When a woman does reach the healthcare facility, she may
encounter additional barriers as the office may not employ adaptive
technology to adequately accommodate patients with disabilities.

Attitudes of healthcare providers and policy makers are a third barrier.
Where providers are not knowledgeable about disabling conditions or
persons with disabilities, the patient with a disability may receive
incomplete care. For example, a doctor may incorrectly assume a woman
who uses a wheelchair is not sexually active and therefore not perform
screening tests for cervical cancer. Policymakers who are not educated
about the healthcare needs of persons with disabilities have not
allocated sufficient resources to meet the healthcare and wellness needs
of this population. Both incomplete services and lack of resources may
lead to negative health outcomes among women with disabilities.

***Recommendations***

1)  Cultural competence is critical when interacting with women of color
    with disabilities. Service providers need to be informed about their
    clients' culture and then treat that culture with respect. In order
    to work effectively with these women, providers must accepted the
    culture as different, but not deficient. Culture must be understood
    as an important part of treating medical challenges.

> Dr. Ross provided the following recommendations in treating women of
> color with disabilities in a culturally sensitive and competent
> manner:

-   Persons with disabilities are people. Treat them with respect.

-   A disability is only one aspect of a person's life.

-   Use appropriate language.

-   Talk directly to the person.

-   If in doubt, ask.

2)  Healthcare facilities and healthcare providers must be accessible.
    Persons with mobility impairments need accessible parking and ramps.
    For persons with hearing disabilities, reasonable accommodations
    include TDD devices, familiarity with telecommunication
    abbreviations, and interpreters. Visual disabilities can be
    accommodated by providing health communication materials in Braille
    and large format displays. For communication disabilities, providers
    should take time to listen to the person, solicit and provide
    feedback, and reduce or eliminate background noise. Asking persons
    with disabilities if they want assistance is appropriate.

3)  In order to make further progress in the service delivery system
    serving women of color with disabilities:

    -   Research is needed around cultural competence in service
        delivery.

    -   Employment opportunities must be enhanced, promoted, and
        sustained.

    -   Community participation and accessible education need to be
        supported.

    -   Partnerships where evidence-based practice models can be
        developed must be identified.

## Optimal Healthcare for Women of Color with Disabilities

### Jaye Hefner, M.D.

*Instructor in Medicine*

*Harvard Medical School*

*Spaulding Rehabilitation Hospital*

*Massachusetts General Hospital*

***Overview***

The focus for serving people with disabilities should be on healthcare,
not disability care. Very few primary care needs are unique to
individuals with disabilities. The challenge is often not the
disability. Primary care does not differ across disability or between
persons with disabilities and persons without disabilities. The
challenge is in the access to that care. Quality primary care for women
of color with disabilities requires improved access, elimination of
barriers, increased availability of healthcare services, and increasing
provider understanding of cultural and ethnic uniqueness.

One in five females (19.6 percent) over the age of 5 years reports some
type of disability. Further, although exact numbers vary depending on
the definition used, rates of disability increase with age. The risk
factor of age is a real concern for women: Of the 28 million women in
the United States, 16 million are over the age of 50 years. Women of
color face an additional statistical challenge: African Americans have
the highest rate of disability from ages 15 to 54 years and over the age
of 65 years. Hispanics have the highest rate of disability between the
ages of 55 and 64 years.

Disability, gender, and race/ethnicity represent "triple jeopardy."
Research indicates that the consequences of having a disability are
particularly serious for women. Women with disabilities often have less
access to essential services such as healthcare, education, and
vocational rehabilitation. The struggles that all women and minorities
face are intensified as a result.

Access barriers constitute the majority of the limitation of primary
healthcare services. These barriers include:

-   Unmet transportation needs.

-   Lack of provider knowledge regarding disabilities.

-   Providers' refusal/inability to give medical treatment.

-   Architectural barriers.

-   Negative attitudes.

***Barriers and Challenges***

The challenges facing women of color with disability are similar to
those facing all women with disabilities, but they also face additional
challenges. A woman's disability status affects routine screening. Women
with mobility impairments are 70 percent less likely to get pap smears,
30 percent less likely to get mammograms, and, among smokers, 20 percent
less likely to be asked about their smoking history. Some primary care
providers seem to believe these routine services are not needed if a
woman has a disability. This omission in preventive care can lead to
severe consequences in these otherwise healthy women.

Women, minorities, and persons with disabilities are not adequately
represented in popular media publications. For example, nearly six
million children with disabilities are mainstreamed, yet they are
infrequently included in *Highlights for Children* and *Sesame Street
Magazine*, two of the most popular children's magazines. From 1961 to
1990, only 63 disability-related articles were published. Only five of
these stories featured an African American character; no Asian or
Hispanic characters were represented. Twenty-five stories featured a
male character; 18 depicted a female character; and 19 were either mixed
or nongender specific. This finding is important because it shows the
way women of color with disabilities have been viewed by the general
population and healthcare providers. Women of color with disabilities
are invisible to popular media publications and healthcare training
curriculum. They are underrepresented in medical studies and medical
publications.

For women facing the triple oppression of gender, race, and disability
discrimination, culturally competent care is critical. Cultural
competence is the understanding about various beliefs and needs
associated with a person's age, gender, race, ethnicity, and religious
background. The culture of disability is not included in this definition
of cultural competence. This reason is primarily due to the difficulty
in defining disability. No consensus exists. The International
Classification of Functioning, Disability, and Health considers the word
an umbrella term encompassing medical and social components. In the
medical view, a person *has* a disability; something is considered to be
wrong with her. In the social perspective, the problem is environmental;
aspects of her social and physical environment limit her functioning
because the physician may be thinking the patient has a disability while
the patient may think none exists. This fundamental difference in how a
patient is perceived and the lack of communication may not leave room
for culturally competent care.

Self-perception is an important aspect of the culture of disability.
Depending on an individual's level of functioning and her ability to act
independently, she may not perceive herself as disabled. For women of
color with disabilities, complex cultural factors may also influence
this self-perception and reporting of disability. In fact, women, racial
minorities, and Hispanic survey respondents are much less likely to say
they are disabled than men and white or non-Hispanic respondents. A
woman of color with a disability may not identify herself as having a
disability because she feels disenfranchised with that minority group.
She may not be willing to identify herself with two minority groups,
particularly when having a disability is one of the groups.
Understanding how women of color with disabilities define themselves is
an important in providing culturally competent care.

Another aspect of disability culture is self-perception. Depending on an
individual's level of functioning and her ability to act independently,
she may not perceive herself as disabled. For women of color with
disabilities, complex cultural factors may also influence this
self-perception and reporting of disability. Women, racial minorities,
and Hispanic survey respondents are much less likely to report that they
are disabled than men and white not Hispanic respondents. If a person is
disenfranchised because of membership in one minority group, she may be
unwilling to identify with yet another group she perceives as excluded.

***Recommendations***

1)  The culture of disability must be incorporated into cultural
    competence training and medical education. This is an important step
    in removing the barriers of access and negative attitudes between
    women of color with disabilities and healthcare providers. Cultural
    competence is important for effective communication and
    understanding needs and values. It is important for providers to
    understand that there are no hierarchies in culture. People may hold
    simultaneous cultural associations, each of which has implications
    for the care process. When a healthcare provider sees a patient who
    has a disability and is a woman of color, each of those three
    cultures impacts communication and should play a role in the care
    that is delivered. The provider must adequately communicate with the
    patient and make sure that the patient is satisfied with the visit
    at its end.

2)  Doctor-patient communication needs to be improved. Culturally
    competent communication needs to include all of the cultures of
    which the patient is a member, even if she does not self-identify as
    a part of a particular culture.

3)  Disability-related screening is important. Suggested questions
    include:

-   Has someone withheld something from you such as medications or
    assistive devices?

-   Has someone walked out of the room when you needed him or her,
    knowing you would be unable to transfer without assistance?

-   Has someone prevented your from obtaining a job? Finding a house?

4)  The prevention of secondary conditions also needs to be addressed.
    Secondary conditions are medical conditions to which people with
    disabilities are more susceptible by virtue of their underlying,
    disabling condition. These conditions may be physical, medical,
    cognitive, emotional, or psychosocial. Examples include depression,
    hypertension, chronic pain, skin breakdown, undetected disease,
    abuse, pulmonary complications, unwanted weight gain, excessive
    fatigue, social isolation, bowel and bladder complications,
    osteoporosis, and infertility.

5)  Important steps to improving the care of women of color with
    disabilities include:

-   Make sure that the patient can get up on examination table.

-   Make sure that mammograms can be performed regardless the patient's
    position.

-   Overcome financial constraints by scheduling appropriately and using
    time-based coding.

-   Always document time spent with the patient and family members.

In summary, there are tremendous unmet needs in clinical care, medical
education and training, and clinical research. These needs must be met
in order to close the gap and eliminate health disparities that exist
for women of color with disabilities.

## Catalyzing Quality Improvements in Healthcare Services for Women of Color with Disability

### Rosaly Correa de-Araujo, M.D., MSc, Ph.D. 

*Director*

*Women's Health and Gender-Based Research*

*Agency for Healthcare Research and Quality*

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

***Overview***

Numerous gaps exist in the healthcare service provided to women of color
with disabilities. According to the definition of disability under the
Americans with Disability Act of 1990, women and girls represent
approximately half (53 percent) of the 54 million people in the United
States who currently experience some level of disability. The act
defines a person with disabilities as a "*person who has a physical or
mental impairment that substantially limits one or more major life
activities, a person who has a history or record of such impairment, or
a person who is perceived by others as having such an impairment."*
Approximately half of the estimated 54 million people in the United
States who currently experience some level of disability are women and
girls, and approximately 5.5 million of these women receive social
security benefits.[^1]

Research on the special healthcare needs of women with disabilities is
severely limited. As a consequence, policies often do not reflect or
target these special healthcare needs and therefore may not be of
benefit to women with disabilities. In the areas of mental health,
reproductive health, and violence, the risks and barriers to women with
disabilities have been well documented. Depression, eating disorders,
and destructive stereotypes are among the mental health issues
disproportionately affecting this population, and studies have shown
that women with disabilities are more likely to experience emotional,
physical, and sexual abuse and are less likely to be believed when
reporting on these issues than their peers without disabilities.

According to the Progress Review on Disability and Secondary Conditions,
the sixth in a series of assessments of Healthy People 2010 focus areas,
the majority of the national health objectives for persons with
disabilities have not been met. Across a number of age groups,
disparities continue between women with disabilities and women without
disabilities as well as among women with disabilities of various races
and ethnicities. Research has shown that women with disabilities are
less likely to receive preventive care services than women without
disabilities. For example, about 69 percent of adult women with
disabilities report having pap smears, compared with 77 percent of women
without disabilities. In addition, 50 percent of women with disabilities
50 years of age and above report having breast exams and mammograms,
whereas 56 percent of women without disabilities in the same age group
have these preventive screenings. Providers may contribute to the gaps
and disparities by failing to inquire about and discuss issues related
to diet, exercise, pain, sleep habits, and quality and, and changes in
the functions of disabled women.

***Barriers and Challenges***

Women with disabilities struggle with limited access to healthcare.
Existing studies about health-seeking behavior indicate that access to
healthcare and rehabilitation services is particularly insufficient for
women with physical impairments. In one study, 32 percent of respondents
reported difficulty in physically accessing their doctor's office, 38
percent in accessing office equipment, and 23 percent accessing the
washrooms. Further, 19 percent said that they received inadequate
primary care, and 22 percent said that without their disability, the
quality of the primary care they received probably would have been
better.[^2]^,^ [^3]

The prohibitive cost of healthcare also limits access. Persons with
disabilities in poor, near-poor, and middle-income households experience
more difficulties in physically accessing doctors than high-income
households. Among racial/ethnic groups, the percentage of individuals
reporting difficulty getting to the doctor from home is higher among
Hispanics than among whites.[^4]^,^ [^5]

Although these disparities and barriers in preventive and primary care
for women with disabilities are documented, research around resulting,
preventable secondary conditions is limited. In a study of 170 women
with disabilities between the ages of 21 and 65 years, 96 percent
reported having seen a general healthcare provider in the past 6 months.
Sixty percent of these women reported having seen such a provider three
or more times. However, despite having seen these providers, many women
had not had a routine gynecological cancer screening in the past 5
years, and they had experienced an average of 12 secondary complications
in the past year. Secondary conditions, including fatigue, spasticity,
deconditioning, joint pain, and depression, are all preventable with
appropriate preventive, primary care.Error: Reference source not found

When collecting data to report on health services provided to disabled
people, researchers face problems with defining and measuring
disability. Without a single definition of disability, measuring rates
of disability and studying trends in the health-seeking behavior of
persons with disabilities is difficult. Currently the identification of
functional activity limitations or the criteria for eligibility for
programs such as Social Security Disability Insurance are used to
identify persons with disabilities for research studies. The National
Healthcare Quality and Disparities Reports use the functional activity
limitations to identify and analyze data on health services. Functional
status is determined by considering activities of daily living (ADL),
which include bathing, dressing, eating and getting around inside the
house, and the instrumental activities of daily living (IADL), which
include going outside the home, keeping track of money, preparing meals,
and doing light housework. Considerable gaps still exist in the
availability of measures to assess disparities across racial and ethnic
groups with respect to functional limitations.

Small sample sizes in data collected also preclude the study of
disparities among disabled nonelderly persons under Medicare. New
preliminary data are being analyzed by gender, race/ethnicity, and
functional status. These analyses of Medicare recipients show gender,
race/ethnicity, and functional level differences in access to care among
disabled community residents under the age of 65 years. Healthcare
providers need to be sensitive to women of color with disabilities who
may incur multiple barriers in accessing care as a result of their
identification in all three of these groups.

-   Although rates still need to be improved, black women are slightly
    more likely than women of other races/ethnicities to obtain
    mammograms and pap smears.

-   Women with limits to more than three activities of daily living are
    less likely than women with fewer functional limitations to have
    mammograms and pap smears.

-   Women with disabilities are less likely to have screening tests for
    colon cancer, including colonoscopies and sigmoidoscopies.

-   Among persons with disabilities, blacks are less likely to use home
    fecal blood tests than whites and Hispanics.

-   Ninety percent of women with disabilities get bone density
    measurements while only seven percent of men with disabilities have
    this screening test performed.

-   Hispanics and blacks are less likely than whites to have bone
    density screening tests.

***Recommendations***

1.  Women with disabilities constitute a large segment of the U.S.
    population. Healthcare providers have the opportunity and ability to
    enhance health, wellness, and quality of care for these women.
    Quality improvement interventions and treatment models for women
    with disabilities should focus on preventive services and the
    management of secondary conditions.

2.  Improving data collection is critical to understanding disparities
    in access to healthcare and wellness services for women of color
    with disabilities. Inclusive research will help answer questions
    about the reasons behind health care disparities. Data collection,
    however, should be broadened to include information on specific
    cultural issues that may affect healthcare and disease outcomes.
    Moreover, data collection allows for monitoring progress and
    creating best practices models toward improvements in the quality of
    healthcare services provided to women with disabilities.

## Clinical Issues in Delivering Rehabilitation Services to the Asian Chinese Community in New York City Chinatown

### Victoria Zhang, M.D.

*Medical Director*

*Rusk Institute of Rehabilitation Medicine, New York Downtown Hospital*

*Clinical Assistant Professor*

*New York University Rusk Institute of Rehabilitation Medicine*

***Overview***

Osteoporosis, osteoarthritis, and back pain are very common conditions
that are disabling to many Chinese American women. Bone density
screening data from New York Downtown Hospital indicate that 14 percent
of Chinese women 55 to 60 years of age have already suffered a fracture,
and 20 percent of Asian women over 50 years meet the diagnostic criteria
for osteoporosis. Compared to U.S. born Chinese Americans and white
populations, foreign-born Chinese individuals have a lower bone mineral
density in every age group. Yet many Asian Americans do not recognize
osteoporosis and these other conditions as disabilities, and due to
language and cultural barriers, Chinese American women encounter
multiple barriers in seeking prevention and treatment services.

Over 50 percent of the Asian population in United States lives in New
York City and California. More than 870,000 Asians live in New York
City, 140,000 live in Manhattan alone, and between 70,000 and 120,000
live in Chinatown.

In Chinatown, the elderly population increased 15 percent from 1990 to
2000. Estimates put the increase between 1990 and 2030 at 643 percent,
compared to 91 percent for other racial groups in the area. About 35
percent of senior citizens in Chinatown live below the poverty line,
compared to 19 percent citywide. Further, 62 percent of elderly
Chinatown residents speak little or no English, which makes seeking and
accessing healthcare even more difficult.

New York Downtown Hospital is very close to Chinatown and serves this
population. Sixty percent of inpatients and 83 percent of outpatients
come from the New York City immigrant Chinese community. The hospital
offers total health services and has three offsite primary clinical
centers in three different boroughs. One of these centers is in
Chinatown and provides free bone marrow density screening tests for
early detection of osteoporosis.

At the Downtown Hospital, the Rusk Institute of Rehabilitation has an
interdisciplinary community rehabilitation team composed of bilingual
rehabilitation physicians, physical and occupational therapists,
clinical coordinators, and geriatric social workers.[^6] The team
participates in an outreach, education, and rehabilitative program for
outpatients. This program aims to provide high quality, efficient, and
effective healthcare services and to promote wellness, dignity,
mobility, and independence for the elderly persons in the community.
Intake screening tests are conducted with each patient to identify
cultural, communication, and transportation barriers to her successful
care. Language barriers are prevented by the availability of
interpreters 24 hours a day and by the fact that more than half of the
hospital employees are bilingual, with Chinese is spoken in every
department. In addition, signage in the hospital is in both English and
Chinese, and there are Chinese versions of documents from the
registration form to the menu in the dining facility. When
transportation is identified as a barrier, shuttle bus service is
provided to the patient.

***Barriers and Challenges***

Recently immigrated, elderly Chinese women are at the highest risk for
osteoporosis. These women often had poor nutrition during childhood and
have other risk factors including diet, lack of calcium, aging, small
and thin body frame, and lack of exercise. Further, they lack knowledge
of causes, prevention, and treatment of osteoporosis. Cultural
differences lead many of them to distrust the mainstream Western medical
system and contribute to their belief of this condition as a natural
part of aging rather than a disease to be prevented and treated. This
minority population would benefit from education about the prevention
and treatment of osteoporosis.[^7]

***Recommendations***

1)  For elderly Chinese American women, cultural, communication, and
    transportation issues have the greatest influence on quality of
    life. The first action needed to prevent the development of
    preventable disabilities in this population is to overcome language
    barriers in order to improve the understanding of preventive
    healthcare.

2)  Educational workshops held at community sites---including clinics,
    senior centers, and assisted living housing facilities---can reach
    many people. Workshops in these locations are also good ways to
    provide referrals to attendees.

3)  Community health fairs are another effective way to reach out to the
    elderly population and present information on programs and services.
    The fairs are another good venue for providing referral sources.

4)  Street fairs are yet another avenue to reach elderly minority
    populations and are an appropriate setting to provide free
    screenings and rehabilitation consultation.

5)  Offering initial screenings at a convenient location, especially
    within walking distance, is suggested. The hospital setting allows
    referrals to be arranged and for providers to encourage patients to
    participate in community activities.

## Addressing the Healthcare and Wellness Issues of Women of Color with Disabilities

### Gloria Johnson-Powell, M.D.

*Director*

*Center for the Study of Cultural Diversity in Healthcare*

*Health Sciences Learning Center*

*University of Wisconsin Medical School*

***Overview***

Girls and female adolescents of color with disabilities face a number of
challenges. In some cases, she has to develop an understanding of why
and how she became disabled. The child or adolescent with a disability
has to learn and develop specific skills to manage her impairment. She
must continue to manage the developmental changes and social aspects of
adolescence. She must continue her education, sometimes without the
accommodations she needs. The most important task she will be faced
with, however, is to shape her self-concept as a minority female with a
disability in society.

The multiple professionals involved in the care of girls and young women
of color with disabilities need to be able to help them manage the
development of several identities, including young adolescent girl,
person of color, and person with a disability. The rehabilitation agenda
must address all the processes associated with achieving independence
and creating a lifestyle to sustain her independence. She must be
positioned to maximize her success and create a satisfying life for
herself. Where a girl has been in a children's residential hospital or a
school for disabled children, multidisciplinary services attending to
these specific needs can support her transition to her own home.

**Barriers and Challenges**

A study considering integrated schooling, found that black adolescent
girls were the most vulnerable in the process of identity formation. For
this group, managing racial stigma and minority stereotypes was a major
obstacle. Often these cultural stereotypes are subconscious and persist
even in teachers and other professionals who try to reject prejudice.

**Recommendations**

1)  One of the most important models for developing a system of care for
    children of color with disabilities is that used with children with
    developmental disabilities.

2)  Cultural sensitivity and cultural competence must be required
    training for all professionals who will work with children and young
    women of color with disabilities. Training should include:

-   Valuing diversity.

-   Managing the dynamics of difference.

-   Skills of self-assessment.

-   How to acquire knowledge of other cultures.

-   How to adapt to the cultural context of the communities served.

3)  Professionals should consider families to be experts on their
    culture and their child. Including the child's family in her care is
    important to a successful outcome.

## Navigating through Life on a Tightrope: A Look at American Indian Women with Disabilities

### Cinda Hughes

*Legislative Associate*

*National Congress of American Indians*

***Overview***

There are very few statistics and very few evidence-based projects on
Native American women with disabilities. Life as an American Indian who
also lives with a disability is difficult and demanding at best. She
must navigate her life like trapeze artist on a tight rope.

Native American Indian identity is reflected in language and
"home-family structure." Many Native Americans are raised with English
as a second language and with a deep sense of community over
individualism. Many Native Americans choose to live their entire lives
within the ancestral tribal homeland.

Twenty-two percent of the American Indian and Alaska Native (AI/AN)
population has one or more disabilities. This is the highest per capita
rate of disability among all racial/ethnic groups in the United States.
Of the 2.5 million Americans who identified themselves as exclusively
American Indian or Alaska Native in the 2000 Census, at least 550,000
have a disability. Fifty-one percent of this population is female, so
approximately 62,000 Indian women are living with a disability.

The leading causes of disability in the AI/AN population are spinal cord
injury, diabetes complications, blindness, mobility impairment,
traumatic brain injury, deafness or hardness of hearing, orthopedic
conditions, arthralgia, mental health conditions, learning disabilities,
and alcoholism or drug dependence.

American Indians have a shorter life expectancy and suffer
disproportionately higher rates of disease than the general population.
The Indian Heath Service (IHS) is the Federal agency charged with the
responsibility of eliminating these disparities. Yet funding for IHS
remains inadequate to support the healthcare and wellness needs of this
population. Per capita expenditures for the AI/AN population through IHS
remains 50 percent lower than per capita expenditures for Medicaid
beneficiaries and 33 percent lower than Veterans Affairs Administration
beneficiaries.

**Barriers and Challenges**

Cultural sensitivity and cultural competence of healthcare providers is
critical to the Native American population. Cultural competence
represents the ability of healthcare providers and healthcare
organizations to understand and respond effectively to the cultural and
linguistic needs of patients. Culturally appropriate interventions for a
Native American woman depend upon her tribal affiliation, the level of
her traditional beliefs, and her acculturation to Western, biomedical
healthcare systems.

Inadequate healthcare and wellness services are contributing to the
development of permanent disabilities in a significant portion of the
Indian population. Among all racial/ethnic groups, American
Indian/Alaska Natives have the least access to routine healthcare. Those
relying on IHS provider services have access to half as many nurses and
physicians as the general U.S. population.

In addition, there is a clear void of preventive care for the AI/AN
population. This void is evidenced by the growing disparities in certain
preventable health conditions, including diabetes, heart disease,
cancer, tuberculosis, and injuries. These conditions often result in
permanent disability.

Most Americans live in ignorance of the daily struggles of the one in
three Indians who lives with a disability. There is a dearth of research
and practice information concerning Native Americans with disabilities
and Native American women with disabilities, in particular.
Acculturative entities and organizations must become involved in
researching and gathering statistics on Native Americans with
disabilities.

Three important gaps negatively affect the health and wellness of the
AI/AN population:

-   Lack of funding and support for community-based attendant services.

-   Lack of funding and support for culturally appropriate vocational
    rehabilitation resources.

-   Lack of services available through IHS due to funding deficiencies.

***Recommendations***

Several opportunities exist to support positive legislation that would
directly impact the lives of all Americans with disabilities. The
National Congress of American Indians supports:

1)  Passage of bill number S401 and HR910 to amend Title 19 of the
    Social Security Act, the Medicaid Community-Based Attendant Services
    and Support Act, which would help all persons with a disability to
    receive home healthcare and related services within their own
    communities.

2)  A steady expansion of the American Indian Vocational Rehabilitation
    Services Program.

3)  The reauthorization of the Indian Health Care Improvement Act.

According to one workgroup's recent cost model, IHS appropriated funding
accounts for only 59 percent of the monies needed to provide adequate
personal healthcare services to American Indians nationally and only 54
percent for those living in the IHS service areas in 35 States.
Additional funding for healthcare would significantly reduce the number
of Indians who will develop a permanent disability.

# III. Action Plan

Following the presentations, participants were divided into three
workgroups to brainstorm and develop action plans toward helping women
of color with disabilities attain improved access, availability, and
services. Through interactive discussions, each group identified
specific objectives in their topic area, barriers and challenges to be
addressed, action steps recommended, entities responsible for taking
action, and the timeframe for action to occur (see Appendix D for
Workgroup Information). This process resulted in action steps toward
improving healthcare access, availability, and services for the target
population.

Workgroup facilitators reported back to the entire group with highlights
of their groups' discussions, including the recommended action steps.
The following tables display the key points for each action plan. Due to
time constraints not all points were discussed for each objective
identified. Further, timeframe is not reflected here because
participants wanted every action to be addressed in a short period of
time or to be ongoing.

Each workgroup presented four to five objectives requiring action. In
the tables, objectives are presented as recommendations for action. No
priorities were assigned to objectives during the discussion, so the
order of the recommendations is not significant.

Following the Pre-Conference, the Office on Disability will work to
implement these recommendations toward the goal of helping women of
color with disabilities attain improved access to healthcare and
wellness services.

## Workgroup on Access

**Access** is defined as the level of contact a woman of color with
disabilities has to preventive and maintenance healthcare and wellness
resources. These resources include general and specialized healthcare
providers, medical facilities and equipment, and culturally competent
and sensitive healthcare providers and entities.

**Goal Statement:** Women of color with disabilities nationwide will
have access to preventive and maintenance healthcare and wellness
resources, which promote independence and exist at a level comparable to
that of the general population.

+------------------+------------------+---------------+----------------+
| **Workgroup on   |                  |               |                |
| Accessibility**  |                  |               |                |
+==================+==================+===============+================+
| **Recommendation | **Barriers and   | **Action      | **Responsible  |
| for Action**     | Challenges**     | Steps**       | Entities**     |
+------------------+------------------+---------------+----------------+
| Provide access   | -   Mass         | -   Conduct   | DOT            |
| to               |                  |               |                |
| transportation   |   transportation |    preven­tive | Vocational     |
|                  |     issues       |               | Reha­bilitation |
|                  |                  |   mainte­nance | (VR)           |
|                  | -   Financial    |               |                |
|                  |     issues       | -   Enforce   |                |
|                  |                  |               |                |
|                  | -                |    compli­ance |                |
|                  |  Undereducated/\ |               |                |
|                  |                  | -   Enforce   |                |
|                  |    nonculturally |               |                |
|                  |     com­petent    |   inspec­tions |                |
|                  |     drivers      |               |                |
|                  |                  | -   Encourage |                |
|                  | -                |     pro­vider  |                |
|                  |    Communication |     review    |                |
|                  |     in           |               |                |
|                  |                  | -   Support   |                |
|                  |   transportation |     504       |                |
|                  |     system       |     advocacy  |                |
|                  |                  |               |                |
|                  | -   Backup       |               |                |
|                  |                  |               |                |
|                  |   transporta­tion |               |                |
+------------------+------------------+---------------+----------------+
| Support          | -   Lack of      | -   Seek      | -   Federal    |
| universal design |     universal    |     Federal   |     Agencies   |
| of medical       |     design in    |     mandate   | ---De­partments |
| facilities and   |     equip­ment    |     for       |     of Justice |
| equip­ment        |     and          |               |     (DOJ) and  |
|                  |     facilities   |    inspection |     Health and |
|                  |                  |     and       |     Human      |
|                  |                  |               |     Services   |
|                  |                  |   enforcement |     (HHS)      |
|                  |                  |     of ADA,   |                |
|                  |                  |     Sections  | -   Joint      |
|                  |                  |     504 and   |     Commis­sion |
|                  |                  |     508       |     for the    |
|                  |                  |               |                |
|                  |                  | -   Seek      |  Accreditation |
|                  |                  |               |     of         |
|                  |                  | accredita­tion |     Healthcare |
|                  |                  |     of        |                |
|                  |                  |               |  Organizations |
|                  |                  |    facilities |                |
|                  |                  |               | -   Others     |
|                  |                  |               |     (for       |
|                  |                  |               |     ex­ample,   |
|                  |                  |               |     women's    |
|                  |                  |               |     shelters)  |
+------------------+------------------+---------------+----------------+
| Provide access   | -   Low vision   | -   Offer     | -   DOJ, HHS   |
| to culturally    |                  |               |                |
| and              | ```{=html}       |   alternative | -   State and  |
| lin­guistically   | <!-- -->         |     formats   |     local      |
| appropri­ate      | ```              |     (for      |                |
| language and     | -   Impaired     |     ex­ample,  |    governments |
| as­sistive        |     hearing      |     Braille)  |                |
| technologies in  |                  |               |                |
| order to improve | ```{=html}       | -   Require   |                |
| communication    | <!-- -->         |               |                |
| be­tween          | ```              |  inter­preters |                |
| healthcare       | -   Vision       |     at access |                |
| pro­viders and    |     barriers     |     points    |                |
| patients         |     such as      |               |                |
|                  |     back­ground   | -   Seek      |                |
|                  |     color        |     Federal   |                |
|                  |                  |     mandate   |                |
|                  | ```{=html}       |               |                |
|                  | <!-- -->         | ```{=html}    |                |
|                  | ```              | <!-- -->      |                |
|                  | -   Language     | ```           |                |
|                  |     barriers     | -   Promote   |                |
|                  |                  |     best      |                |
|                  | -   Enforcement  |     practices |                |
|                  |     of           |     to model  |                |
|                  |                  |               |                |
|                  | > Section 508    |               |                |
|                  | > for computer   |               |                |
|                  | > Internet       |               |                |
|                  | > access         |               |                |
+------------------+------------------+---------------+----------------+
| Provide access   | -   Poverty      | -   Use       | -   Centers    |
| to resources     |                  |     n         |     for        |
| closest to home  | -   Lack of      | ontradi­tional |     Dis­ease    |
|                  |                  |     outlets   |     Control    |
|                  |    communication |     to        |     and        |
|                  |                  |               |                |
|                  | -   Lack of      |    distribute |    Prevention, |
|                  |     access to    |               |     HHS        |
|                  |     computers    |   information |                |
|                  |                  |               | -   Local      |
|                  | -   Lack of      |               |                |
|                  |     insurance    |               |    govern­ments |
|                  |                  |               |                |
|                  |                  |               | -   Faith      |
|                  |                  |               |                |
|                  |                  |               |  organiza­tions |
|                  |                  |               |                |
|                  |                  |               | -   Assisted   |
|                  |                  |               |     living     |
|                  |                  |               |     centers    |
|                  |                  |               |                |
|                  |                  |               | -              |
|                  |                  |               |    Independent |
|                  |                  |               |     living     |
|                  |                  |               |     centers    |
|                  |                  |               |                |
|                  |                  |               | -   Other      |
|                  |                  |               |     commu­nity  |
|                  |                  |               |     providers  |
|                  |                  |               |     (grocery   |
|                  |                  |               |     stores,    |
|                  |                  |               |     barber     |
|                  |                  |               |     shops,     |
|                  |                  |               |     beauty and |
|                  |                  |               |     nail       |
|                  |                  |               |     salons)    |
|                  |                  |               |                |
|                  |                  |               | -   Internet   |
+------------------+------------------+---------------+----------------+

##  Workgroup on Availability

**Availability** is defined as the degree to which preventive and
maintenance healthcare and wellness providers, facilities, and equipment
function and obligate resources to women of color with disabilities.
This includes the amount of time these entities are situated to meet the
unique healthcare and wellness needs of this population group.

**Goal Statement:** Healthcare and wellness entities will develop
quality improvement strategies and procedures to increase the quantity,
quality, type and time of medical services in order to reduce health
disparities impacting women of color with disabilities.

+-----------------+----------------+------------------+---------------+
| **Workgroup on  |                |                  |               |
| Availability**  |                |                  |               |
+=================+================+==================+===============+
| *               | **Barriers and | **Action Steps** | **Responsible |
| *Recommendation | Challenges**   |                  | Entities**    |
| for Action**    |                |                  |               |
+-----------------+----------------+------------------+---------------+
| Identify        | -              | -   Identify     | -   Federal,  |
| strategies for  |   Underfunding |     agencies     |     State,    |
| securing        |     of         |     with funding |     and local |
| funding for     |     healthcare |                  |               |
| disability and  |                | -   Bring        |   gov­ernments |
| cultural        | -   HMO        |     funding      |               |
| competence      |                |                  | -   Licensing |
| training for    |  disincentives |    or­ganizations |     boards    |
| health­care      |                |     to­gether     |               |
| providers       | -   Attitudes  |     (govern­ment, | -   Schools   |
|                 |                |     nonprofit,   |     of public |
|                 |                |     and private) |     health    |
|                 |                |                  |               |
|                 |                | -   Increase     |               |
|                 |                |     M            |               |
|                 |                | edi­care/Medicaid |               |
|                 |                |     rates to     |               |
|                 |                |     encourage    |               |
|                 |                |     healthcare   |               |
|                 |                |     providers to |               |
|                 |                |     administer   |               |
|                 |                |     accessible,  |               |
|                 |                |     culturally   |               |
|                 |                |     competent    |               |
|                 |                |     care         |               |
|                 |                |                  |               |
|                 |                | -   HHS mandate  |               |
|                 |                |     a portion of |               |
|                 |                |     each State's |               |
|                 |                |     funding to   |               |
|                 |                |     be used for  |               |
|                 |                |     health­care   |               |
|                 |                |     for women of |               |
|                 |                |     color with   |               |
|                 |                |     disabilities |               |
+-----------------+----------------+------------------+---------------+
| Mandate         | -   Lack of    | -   Identify     | -   Federal,  |
| disability and  |     training   |     schools of   |     State,    |
| cultural        |     among      |     public       |     and local |
| competence on   |     health­care |     health       |               |
| women and       |                |                  |   gov­ernments |
| minorities in   |  profession­als | -   Identify     |               |
| the training of |                |     licensing    | -   Agency    |
| healthcare and  | -   Limited    |     boards       |     for       |
| allied          |     funding    |                  |               |
| healthcare      |     for        | -   Launch       |    Healthcare |
| professionals   |     training   |     advocacy     |     Research  |
|                 |                |     campaign for |     and       |
|                 | -   Lack of    |     Fed­eral,     |     Quality,  |
|                 |     training   |     State, and   |     Sub­stance |
|                 |     models     |     local        |     Abuse and |
|                 |                |     governments  |     Mental    |
|                 | -   Lack of    |                  |     Health    |
|                 |     scheduled  | -   Establish    |     Services  |
|                 |     workshop   |                  |     Ad        |
|                 |     training   | agency/committee | ministration, |
|                 |                |     to institute |               |
|                 | -   Inadequate |     manda­tory    |    Department |
|                 |     level of   |     disability   |     of        |
|                 |     research   |     tra          |     Education |
|                 |     effort     | ining/continuing |               |
|                 |                |     education    | -   Insurance |
|                 |                |     for          |     industry  |
|                 |                |     healthcare   |               |
|                 |                |     providers,   |               |
|                 |                |     schools of   |               |
|                 |                |     public       |               |
|                 |                |     health,      |               |
|                 |                |     medical,     |               |
|                 |                |     nursing,     |               |
|                 |                |     pharmacy,    |               |
|                 |                |     and          |               |
|                 |                |     dentistry    |               |
+-----------------+----------------+------------------+---------------+
| Increase        | -   Lack of    | -   Identify     | -   Federal,  |
| account­ability  |     attention  |     agencies/\   |     State,    |
| by mandating    |     paid to    |     committees   |     and local |
| s               |     women with |     to advocate  |               |
| elf-assessments |                |     for          |   gov­ernments |
|                 |   disabilities |     man­datory    |               |
|                 |     by         |                  | -   Agency    |
|                 |     healthcare |  self-assess­ment |     for       |
|                 |     providers  |                  |               |
|                 |                | -   Identify     |    Healthcare |
|                 | -   Healthcare |     contractors  |     Quality   |
|                 |                |     to develop   |     and       |
|                 | pro­fessionals' |                  |     Research, |
|                 |     limited    |  self-assessment |     Sub­stance |
|                 |     knowl­edge  |     tool         |     Abuse and |
|                 |     of         |                  |     Mental    |
|                 |     disability | -   Identify     |     Health    |
|                 |     and        |     agency and   |     Services  |
|                 |     cultural   |     contractors  |     Ad        |
|                 |     issues     |     for          | ministration, |
|                 |                |     in­terpreting |               |
|                 | -   Lack of    |     and          |    Department |
|                 |     s          |     re­porting    |     of        |
|                 | elf-assessment |                  |     Education |
|                 |     tools      | self-assessments |               |
|                 |                |                  | -   Insurance |
|                 |                | -   Report first |     industry  |
|                 |                |     assess­ment   |               |
|                 |                |                  |               |
|                 |                | -   Issue RFPs   |               |
|                 |                |     to test      |               |
|                 |                |     systemic     |               |
|                 |                |                  |               |
|                 |                |    interventions |               |
|                 |                |     that improve |               |
|                 |                |                  |               |
|                 |                |   accountability |               |
+-----------------+----------------+------------------+---------------+
| Implement       | -   Lack of    | -   Produce and  | -   Federal,  |
| outreach        |                |     pro­mote      |     State,    |
| strategies      |    informa­tion |     local and    |     and local |
|                 |     about      |     national     |               |
|                 |     healthcare |     public       |   gov­ernments |
|                 |     rights     |     service      |               |
|                 |                |                  | -   CMS       |
|                 |   specifi­cally |    announce­ments |               |
|                 |     for women  |     (PSAs)       |               |
|                 |     of color   |                  |               |
|                 |     with       | -   Request      |               |
|                 |                |     Centers for  |               |
|                 |   disabilities |     Medicare and |               |
|                 |                |     Medicaid     |               |
|                 | -   Lack of    |     Services     |               |
|                 |     knowl­edge  |     (CMS) to     |               |
|                 |     about      |     build        |               |
|                 |     where and  |     component    |               |
|                 |     to whom to |     for          |               |
|                 |     report     |     conducting   |               |
|                 |     gaps in    |     out­reach to  |               |
|                 |     service or |     women and    |               |
|                 |                |     minority     |               |
|                 |    inefficient |     with         |               |
|                 |     service    |     disabilities |               |
|                 |                |                  |               |
|                 | -   Social     |                  |               |
|                 |     Security   |                  |               |
|                 |     and        |                  |               |
|                 |     Medicare   |                  |               |
|                 |     policies   |                  |               |
|                 |     and        |                  |               |
|                 |                |                  |               |
|                 |    regulations |                  |               |
+-----------------+----------------+------------------+---------------+
| Increase        | -   Gaps in    | -   Promote New  | -   Federal,  |
| knowledge about |     service,   |     Free­dom      |     State,    |
| gaps in health  |     especially |     Initiative   |     and local |
| care for women  |     for rural, |     for          |               |
| with            |     urban,     |     identifying  |   gov­ernments |
| disabilities    |     poor,      |     gaps in      |               |
|                 |                |     healthcare   | -   State     |
|                 |    non-Eng­lish |     services for |     boards of |
|                 |     speaking,  |     women with   |     health    |
|                 |     and other  |     disabilities |               |
|                 |                |                  |               |
|                 |    un­derserved | -   Identify     |               |
|                 |     women with |     agency to    |               |
|                 |                |     report gaps  |               |
|                 |   disabilities |     found in     |               |
|                 |                |                  |               |
|                 | -   Lack of    |  self-assessment |               |
|                 |     con­sumer   |     evaluations  |               |
|                 |     aware­ness  |                  |               |
|                 |     of the     | -   Provide CMS  |               |
|                 |     right to   |     and Social   |               |
|                 |     complain   |     Security     |               |
|                 |                |                  |               |
|                 | -   Lack of    |   Administration |               |
|                 |     con­sumer   |     with input   |               |
|                 |     aware­ness  |     from         |               |
|                 |     about      |     concerned    |               |
|                 |     where to   |     minori­ties   |               |
|                 |     com­plain   |     (*Federal    |               |
|                 |                |     Reg­ister*    |               |
|                 | -   Limited    |     information  |               |
|                 |     re­sources  |     on meeting   |               |
|                 |     for        |     dates)       |               |
|                 |     healthcare |                  |               |
|                 |     pro­viders  | -   Mandate      |               |
|                 |     for        |     schools of   |               |
|                 |     addi­tional |     public       |               |
|                 |     attention  |     health,      |               |
|                 |     to         |     medicine,    |               |
|                 |     disability |     nursing,     |               |
|                 |     and        |     pharmacy,    |               |
|                 |     cultural   |     and          |               |
|                 |     issues in  |     dentistry to |               |
|                 |     healthcare |     add training |               |
|                 |                |     on the care  |               |
|                 |                |     of women     |               |
|                 |                |     with         |               |
|                 |                |     dis­abilities |               |
|                 |                |     and on       |               |
|                 |                |     cultural     |               |
|                 |                |     competence   |               |
+-----------------+----------------+------------------+---------------+
| Increase        | -   Healthcare | -   Mandate      | -   Federal,  |
| account­ability  |                |                  |     State,    |
| of healthcare   |  pro­fessionals | self-as­sessments |     and local |
| professions by  |     gen­erally  |     in the areas |     advocacy  |
| man­dating       |     overlook   |     of provision |     groups    |
| se              |     women with |     of           |               |
| lf-assess­ments. |                |     healthcare   |               |
|                 |   disabilities |     for women    |               |
|                 |                |     with         |               |
|                 |                |     dis­abilities |               |
|                 |                |     and on       |               |
|                 |                |     cultural     |               |
|                 |                |     competence   |               |
+-----------------+----------------+------------------+---------------+

## Workgroup on Services

**Services** are defined as the professional delivery of care by
healthcare and wellness entities. This includes the interpersonal and
public interaction between provider, entities, and patient and should
address the diversity that exists among women of color with
disabilities.

**Goal Statement:** Healthcare providers and entities will develop the
cultural sensitivity and competency needed to manage, diagnose, and
treat women of color with disabilities with self-respect.

+-----------------+----------------+----------------+-----------------+
| **Workgroup on  |                |                |                 |
| Services**      |                |                |                 |
+=================+================+================+=================+
| *               | **Barriers and | **Action       | **Responsible   |
| *Recommendation | Challenges**   | Steps**        | Entities**      |
| for Action**    |                |                |                 |
+-----------------+----------------+----------------+-----------------+
| Advocate for    | -   Limited    | -   Allocate   | -   Public and  |
| inclu­sion of    |     provider   |     funding to |     private     |
| cultural        |                |     support    |     sector      |
| com­petency      |  understanding |     health     |                 |
| training for    |     about      |     services   |   organiza­tions |
| all healthcare  |                |     research   |                 |
| profes­sionals   |    individ­ual, |     studies to | -   Office on   |
| (medical        |     familial,  |     deter­mine  |     Disabil­ity, |
| schools,        |     and        |     effective  |     Office on   |
| residencies,    |     cultural   |     methods of |     Women's     |
| hospitals,      |                |     ap­plying   |     Health,     |
| schools of      |    perceptions |     and        |     Health      |
| social work,    |     of illness |                |     Resources   |
| allied health)  |     and        |   trans­ferring |     and         |
| to develop the  |     dis­ability |     scientific |     Services    |
| culturally      |     in women   |     knowledge  |     A           |
| sensi­tivity and |     of color   |     into       | d­ministration's |
| compe­tency      |                |     practice   |     Bu­reau of   |
| needed to       | -              |     in order   |     Health      |
| manage,         |    Incongruent |     to improve |                 |
| diagnose, and   |     viewpoints |     health     |    Professions, |
| treat women of  |     on the     |     outcomes   |     Na­tional    |
| color with      |     relevance  |     among      |     Governors   |
| disabili­ties    |     of race,   |     women of   |     Association |
| with knowledge  |     ethnicity, |     color with |                 |
| and respect     |     and        |                | -   In          |
|                 |     culture on |   disabilities | terdisciplinary |
|                 |     health     |                |                 |
|                 |     systems    | -   Allocate   |    professional |
|                 |     design and |     funding to |                 |
|                 |     ser­vice    |     support    |    asso­ciations |
|                 |     delivery   |     health     |     and         |
|                 |                |     services   |                 |
|                 | -   Prevalence |     research   |   or­ganizations |
|                 |     of         |     studies to |                 |
|                 |     negative   |     deter­mine  | -               |
|                 |     pro­vider   |     effective  |   Accreditation |
|                 |     attitudes  |     methods of |     bod­ies      |
|                 |     and/or     |                |                 |
|                 |     perceived  |    inte­grating | -   State       |
|                 |     lack of    |     technol­ogy |     health      |
|                 |     value in   |     in the     |     licen­sure   |
|                 |     delivering |     deliv­ery   |     boards      |
|                 |     cul­turally |     of care to |                 |
|                 |     compe­tent  |     women of   |                 |
|                 |     care to    |     color with |                 |
|                 |     women of   |                |                 |
|                 |     color with |   disabilities |                 |
|                 |                |                |                 |
|                 |   disabilities | -   Establish  |                 |
|                 |                |     an         |                 |
|                 | -   Prevalence |                |                 |
|                 |     of stigma  |    Inter­agency |                 |
|                 |     and        |     Task Force |                 |
|                 |                |     on         |                 |
|                 | dis­crimination |                |                 |
|                 |     in         |   Dis­abilities |                 |
|                 |                |     and        |                 |
|                 |    management, |                |                 |
|                 |                | Cross-Cultural |                 |
|                 |    diagnostic, |     Women's    |                 |
|                 |     and        |     Health,    |                 |
|                 |     treatment  |     charged    |                 |
|                 |     prac­tices  |     with: 1)   |                 |
|                 |     for women  |     developing |                 |
|                 |     of color   |     int        |                 |
|                 |     with       | er­disciplinary |                 |
|                 |                |     standards  |                 |
|                 |   disabilities |     and        |                 |
|                 |                |     guidelines |                 |
|                 | -   Limited    |     for        |                 |
|                 |                |     education  |                 |
|                 |  under­standing |     and        |                 |
|                 |     about the  |     training   |                 |
|                 |     value of   |     on         |                 |
|                 |     us­ing      |     cul­tural   |                 |
|                 |     d          |     competence |                 |
|                 | evelop­mentally |     and        |                 |
|                 |                |     di         |                 |
|                 |    appro­priate | sabilities, 2) |                 |
|                 |     and        |     developing |                 |
|                 |     cul­turally |                |                 |
|                 |     compe­tent  |    re­commenda- |                 |
|                 |     health     |     tions on   |                 |
|                 |     liter­acy   |     methods    |                 |
|                 |     and        |     for        |                 |
|                 |     educa­tion  |     infusing   |                 |
|                 |     aimed at   |     this       |                 |
|                 |     women of   |     content    |                 |
|                 |     color with |     into       |                 |
|                 |                |                |                 |
|                 |   disabilities |    cur­riculums |                 |
|                 |     in order   |     across     |                 |
|                 |     to im­prove |     medical,   |                 |
|                 |     health     |     allied     |                 |
|                 |     outcomes   |     health,    |                 |
|                 |                |     and        |                 |
|                 | -   Limited    |     be­havioral |                 |
|                 |                |     health     |                 |
|                 |  under­standing |                |                 |
|                 |     about the  |    professions |                 |
|                 |     need for   |                |                 |
|                 |     and        |   pro­grams, 3) |                 |
|                 |     potential  |     devel­oping |                 |
|                 |     impact of  |     strategies |                 |
|                 |     organizing |     that link  |                 |
|                 |     provider   |     educa­tion  |                 |
|                 |     educa­tion  |     and        |                 |
|                 |     and        |     training   |                 |
|                 |     training   |     standards  |                 |
|                 |     on         |     to         |                 |
|                 |     cultural   |     tar­geted   |                 |
|                 |     competence |     disparity  |                 |
|                 |                |     measures   |                 |
|                 | -   Resistance |     among      |                 |
|                 |     among      |     women of   |                 |
|                 |     training   |     color with |                 |
|                 |     programs   |                |                 |
|                 |     to add     |  disabilities, |                 |
|                 |     and/or     |     and 4)     |                 |
|                 |     integrate  |     develop­ing |                 |
|                 |     additional |     strategies |                 |
|                 |     cur­ricular |     for        |                 |
|                 |     elements   |     assessing  |                 |
|                 |     on         |     the im­pact |                 |
|                 |     cultural   |     of         |                 |
|                 |     competence |     education  |                 |
|                 |                |     and        |                 |
|                 | -              |     training   |                 |
|                 |   Inconsistent |                |                 |
|                 |     training   | im­plementation |                 |
|                 |                |     on service |                 |
|                 |   re­quirements |     quality    |                 |
|                 |     in         |                |                 |
|                 |     cultural   | -   Convene    |                 |
|                 |     compe­tence |     State      |                 |
|                 |     across the |     policy     |                 |
|                 |     health     |     design     |                 |
|                 |                |     academy    |                 |
|                 |    disci­plines |     in­volving  |                 |
|                 |                |     health     |                 |
|                 | -   Limited    |                |                 |
|                 |     use of     |   departments, |                 |
|                 |     regulatory |                |                 |
|                 |     mechanisms |   pro­fessional |                 |
|                 |     to ensure  |     licen­sure  |                 |
|                 |     adequate   |     boards,    |                 |
|                 |     provider   |     and        |                 |
|                 |     educa­tion  |                |                 |
|                 |     and        |   policymakers |                 |
|                 |     training   |     to assess  |                 |
|                 |     in         |     the        |                 |
|                 |     cultural   |                |                 |
|                 |     com­petence |   impli­cations |                 |
|                 |                |     of linking |                 |
|                 | -              |     mandatory  |                 |
|                 |    Eliminating |     training   |                 |
|                 |     pro­vider   |     in         |                 |
|                 |     adoption   |     cul­tural   |                 |
|                 |     and use of |     competency |                 |
|                 |     a "one     |     to         |                 |
|                 |     size fits  |     licensure  |                 |
|                 |     all"       |                |                 |
|                 |     approach   |   re­quirements |                 |
|                 |     to address |                |                 |
|                 |     the health | -   Pilot a    |                 |
|                 |     needs of   |                |                 |
|                 |     women of   |    coopera­tive |                 |
|                 |     color with |     agreement  |                 |
|                 |                |     program    |                 |
|                 |   disabilities |     with       |                 |
|                 |                |                |                 |
|                 | -   Increasing |  ac­creditation |                 |
|                 |     pro­vider   |     bod­ies to  |                 |
|                 |     cultural   |     facilitate |                 |
|                 |                |                |                 |
|                 |    sensitivity |    integration |                 |
|                 |     and        |     of         |                 |
|                 |     competence |     curri      |                 |
|                 |     through    | culum-infu­sion |                 |
|                 |     effec­tive  |                |                 |
|                 |     education  |   require­ments |                 |
|                 |     and        |                |                 |
|                 |     training   | -   Improve    |                 |
|                 |     on the     |     access to  |                 |
|                 |     health     |                |                 |
|                 |     issues of  |   school-based |                 |
|                 |     women of   |     and        |                 |
|                 |     color with |                |                 |
|                 |                |  school-linked |                 |
|                 |   dis­abilities |     services   |                 |
|                 |                |     by         |                 |
|                 | -   Developing |                |                 |
|                 |     cul­turally |    des­ignating |                 |
|                 |     relevant   |     them as a  |                 |
|                 |     guidelines |     c          |                 |
|                 |     and        | ommunity-based |                 |
|                 |     training   |     resource   |                 |
|                 |     essen­tials |     for such   |                 |
|                 |     to promote |     preven­tive |                 |
|                 |     quality    |     care       |                 |
|                 |     diagno­sis, |     services   |                 |
|                 |     treatment, |     for health |                 |
|                 |     and care   |     screenings |                 |
|                 |     man­agement |                |                 |
|                 |     aimed at   | -   Establish  |                 |
|                 |     women of   |     and fund   |                 |
|                 |     color with |     multiyear  |                 |
|                 |                |     program on |                 |
|                 |   dis­abilities |     ex­emplary  |                 |
|                 |                |     c          |                 |
|                 | ```{=html}     | ommu­nity-based |                 |
|                 | <!-- -->       |     prac­tices  |                 |
|                 | ```            |     in the use |                 |
|                 | -   Developing |     of         |                 |
|                 |                |     assistive  |                 |
|                 |    ap­propriate |     and        |                 |
|                 |     regu­latory |     adaptive   |                 |
|                 |     mecha­nisms |                |                 |
|                 |     to         |   tech­nologies |                 |
|                 |     facili­tate |     in the     |                 |
|                 |     quality    |     delivery   |                 |
|                 |                |     of         |                 |
|                 |   im­provements |     cul­turally |                 |
|                 |     in service |     competent  |                 |
|                 |     delivery   |     care for   |                 |
|                 |                |     women of   |                 |
|                 |                |     color with |                 |
|                 |                |                |                 |
|                 |                |   dis­abilities |                 |
+-----------------+----------------+----------------+-----------------+
| Recruit         | -   Under-     | -   Fund grant |                 |
| professionals   | represen­tation |     pro­grams   |                 |
| who are         |     of         |     that       |                 |
| representa­tive  |     minor­ity   |     intro­duce  |                 |
| of the          |                |     and        |                 |
| commu­nities to  |  professionals |     pro­mote    |                 |
| be served       |                |     health     |                 |
|                 | -   Lack of    |     ca­reers    |                 |
|                 |     cultur­ally |     addressing |                 |
|                 |     competent  |     minority   |                 |
|                 |                |     women with |                 |
|                 |  professionals |                |                 |
|                 |                |   disabilities |                 |
|                 | -   Creating a |     among      |                 |
|                 |     pipe­line   |     students   |                 |
|                 |     of         |     in pre-K   |                 |
|                 |     minority   |     through    |                 |
|                 |                |     post       |                 |
|                 |  professionals |     graduate   |                 |
|                 |     who are    |                |                 |
|                 |                | -   Engage     |                 |
|                 |  knowl­edgeable |     women of   |                 |
|                 |     about the  |     color with |                 |
|                 |     health     |                |                 |
|                 |     needs of   |   dis­abilities |                 |
|                 |     women of   |     in career  |                 |
|                 |     color with |     awareness  |                 |
|                 |                |     cam­paign   |                 |
|                 |   dis­abilities |     planning   |                 |
|                 |                |     as both    |                 |
|                 | ```{=html}     |     healthcare |                 |
|                 | <!-- -->       |     con­sumers  |                 |
|                 | ```            |     and        |                 |
|                 | -   Creating   |     pro­viders  |                 |
|                 |     finan­cial  |                |                 |
|                 |     incentives | -   Conduct    |                 |
|                 |     and        |     career     |                 |
|                 |                |     fairs and  |                 |
|                 |  opportuni­ties |     health     |                 |
|                 |     to attract |                |                 |
|                 |     health     |    professions |                 |
|                 |                |     ca­reer     |                 |
|                 |   profes­sions' |     awareness  |                 |
|                 |     students   |     campaigns  |                 |
|                 |     to pursue  |     that focus |                 |
|                 |     ca­reers in |     on         |                 |
|                 |     minority   |     diver­sity  |                 |
|                 |     women's    |     and        |                 |
|                 |     health     |     disabil­ity |                 |
|                 |                |     and engage |                 |
|                 |                |     learners   |                 |
|                 |                |     across the |                 |
|                 |                |                |                 |
|                 |                |    educational |                 |
|                 |                |     continuum  |                 |
|                 |                |     from pre-K |                 |
|                 |                |     through    |                 |
|                 |                |     postgrad   |                 |
|                 |                |     training   |                 |
|                 |                |                |                 |
|                 |                | -   Enlist     |                 |
|                 |                |     minority   |                 |
|                 |                |     female     |                 |
|                 |                |                |                 |
|                 |                |   entertain­ers |                 |
|                 |                |     as program |                 |
|                 |                |     and        |                 |
|                 |                |     campaign   |                 |
|                 |                |                |                 |
|                 |                |  spokespersons |                 |
|                 |                |     to help    |                 |
|                 |                |     promote    |                 |
|                 |                |     minority   |                 |
|                 |                |                |                 |
|                 |                |  partici­pation |                 |
|                 |                |     in health  |                 |
|                 |                |                |                 |
|                 |                |    professions |                 |
+-----------------+----------------+----------------+-----------------+
| Increase        | -   Lack of    | -   Recommend  | -   Office on   |
| accessibil­ity,  |     access to  |     pol­icy to  |     Disabil­ity  |
| availability,   |     and        |     CMS        |                 |
| and             |                |     re­garding  | -   Office on   |
| reimbursement   |  reimburse­ment |                |     Women's     |
| for             |     for        |  reim­bursement |     Health      |
| comprehensive   |                |     of         |                 |
| ser­vices needed |  com­plementary |                | -   Health      |
| by women of     |     and        |  complementary |     Resources   |
| color to        |                |     and        |     and         |
| include         |    alternative |                |     Services    |
| reimburse­ment   |     medical    |    alternative |                 |
| of facilities   |     services   |     medical    |  Ad­ministration |
| with            |                |     care       |                 |
| specialized     | -   Limited    |                | -   National    |
| ser­vices and    |     research   | -   Increase   |     Institutes  |
| products        |     studies    |                |     of Health   |
|                 |     that       |    develop­ment |                 |
|                 |     validate   |     of         | -   Food and    |
|                 |     use of     |                |     Drug        |
|                 |                |  collabo­rative |                 |
|                 |  complementary |     research   |  Administration |
|                 |     and        |     protocols  |                 |
|                 |                |     in­volving  | -   Constituent |
|                 |    alternative |     the        |                 |
|                 |     medical    |                |   organi­zations |
|                 |     services   |  par­ticipation |                 |
|                 |     as an      |     of Fed­eral |                 |
|                 |     effective  |     agencies   |                 |
|                 |     practice   |     to         |                 |
|                 |     for women  |     validate   |                 |
|                 |     of color   |     various    |                 |
|                 |     with       |     diagnostic |                 |
|                 |                |     and        |                 |
|                 |   disabilities |     treatment  |                 |
|                 |                |     proto­cols  |                 |
|                 | -   Under      |     for women  |                 |
|                 | represen­tation |     of color   |                 |
|                 |     of women   |     with       |                 |
|                 |     of color   |                |                 |
|                 |     with       |   dis­abilities |                 |
|                 |                |                |                 |
|                 |   disabilities | -   Engage and |                 |
|                 |     in general |     fund       |                 |
|                 |     clinical   |     c          |                 |
|                 |     trials and | ommunity-based |                 |
|                 |                |                |                 |
|                 |   spe­cifically |    researchers |                 |
|                 |     those      |     from       |                 |
|                 |     using      |     diverse    |                 |
|                 |                |                |                 |
|                 |  comple­mentary |    communities |                 |
|                 |     and        |     to 1)      |                 |
|                 |                |                |                 |
|                 |    al­ternative |    participate |                 |
|                 |     medi­cal    |     in         |                 |
|                 |     services   |     multisite  |                 |
|                 |                |     clinical   |                 |
|                 | -   Unbalanced |     trials     |                 |
|                 |                |     and 2)     |                 |
|                 |   dis­tribution |     re­cruit    |                 |
|                 |     of ser­vice |                |                 |
|                 |     providers  |   participants |                 |
|                 |     and        |     for study  |                 |
|                 |     facilities |     proto­cols  |                 |
|                 |     that       |     to help    |                 |
|                 |                |     en­hance    |                 |
|                 |    accommo­date |     positive   |                 |
|                 |     special    |     track      |                 |
|                 |     needs      |     record of  |                 |
|                 |                |     studies    |                 |
|                 |    popula­tions |     involving  |                 |
|                 |                |     women of   |                 |
|                 | -   Need to    |     color with |                 |
|                 |     expand     |                |                 |
|                 |                |   disabilities |                 |
|                 |  reimbursement |                |                 |
|                 |     coverage   | -   Provide    |                 |
|                 |     for        |     technical  |                 |
|                 |                |     assistance |                 |
|                 |    preventive, |     ser­vices   |                 |
|                 |                |     to support |                 |
|                 | complementary, |     health     |                 |
|                 |     and        |     planning   |                 |
|                 |                |     efforts    |                 |
|                 |    alternative |     that       |                 |
|                 |     medical    |     fa­cilitate |                 |
|                 |     services   |     improved   |                 |
|                 |                |     and more   |                 |
|                 | -   Need to    |     equita­ble  |                 |
|                 |     increase   |                |                 |
|                 |     funding    |   distribution |                 |
|                 |     support    |     of         |                 |
|                 |     for formal |     culturally |                 |
|                 |     re­search   |                |                 |
|                 |     studies    |    ap­propriate |                 |
|                 |     designed   |     health     |                 |
|                 |     to as­sess  |     resources  |                 |
|                 |     and        |     (man­power, |                 |
|                 |     vali­date   |     facility,  |                 |
|                 |     the use of |     equipment) |                 |
|                 |                |                |                 |
|                 |    alternative |                |                 |
|                 |     and        |                |                 |
|                 |                |                |                 |
|                 |  complimentary |                |                 |
|                 |     medical    |                |                 |
|                 |     services   |                |                 |
|                 |     among      |                |                 |
|                 |     women of   |                |                 |
|                 |     color with |                |                 |
|                 |                |                |                 |
|                 |   disabilities |                |                 |
|                 |                |                |                 |
|                 | -   Enhance    |                |                 |
|                 |     track      |                |                 |
|                 |     record and |                |                 |
|                 |                |                |                 |
|                 |    dis­seminate |                |                 |
|                 |                |                |                 |
|                 |    infor­mation |                |                 |
|                 |     about safe |                |                 |
|                 |     and        |                |                 |
|                 |     ethical    |                |                 |
|                 |     study      |                |                 |
|                 |     protocols  |                |                 |
|                 |     and        |                |                 |
|                 |     standards  |                |                 |
|                 |     used with  |                |                 |
|                 |     women of   |                |                 |
|                 |     color with |                |                 |
|                 |                |                |                 |
|                 |   disabilities |                |                 |
|                 |                |                |                 |
|                 | -              |                |                 |
|                 |   Diversifying |                |                 |
|                 |                |                |                 |
|                 |   ca­pabilities |                |                 |
|                 |     among      |                |                 |
|                 |     service    |                |                 |
|                 |     facilities |                |                 |
|                 |     and        |                |                 |
|                 |                |                |                 |
|                 |  profession­als |                |                 |
|                 |     to provide |                |                 |
|                 |     quality    |                |                 |
|                 |     care to    |                |                 |
|                 |     women of   |                |                 |
|                 |     color with |                |                 |
|                 |                |                |                 |
|                 |   disabilities |                |                 |
+-----------------+----------------+----------------+-----------------+

7

# 

# 

# 

# 

# 

# 

# 

# Appendixes

## Appendix A --- Participant List

**Jennifer K Abdelnour**

Policy Associate

Center for Workers with Disabilities

American Public Human Services Association

810 1st St. NE., Suite 500

Washington, DC 20002

202-682-0100

<Jabdelnour@aphsa.org>

**Diane L. Adams, M.D., M.P.H., C.H.S.-III**

Consultant

Georgia Centers for Advanced Telecommunications Technology

301-570-0387

<Dla8315@aol.com>

**Phoebe B. Ajibade, Ed.D.**

Assistant Professor

Human Performance and Leisure Studies

North Carolina A&T State University

Corbett Gym, Room 202

Greensboro, NC 27411

336-334-7712

<pbajibad@ncat.edu>

**Ericka Alston**

Executive Assistant

President's Committee for People with Intellectual Disabilities

901 D St. SW.

Washington, DC 20447

202-619-0634

<Ericka.alston@acf.hhs.gov>

**Barbara M. Altman, Ph.D.**

Special Assistant for Disability Statistics

National Center for Health Statistics

3311 Toledo Rd.

Hyattsville, MD 20782

301-458-4654

<baltman@cdc.gov>

**Elaine Andrade, R.N., M.B.A**

Hawaii State Department of Health

Office of Health Equity

1250 Punchbowl St., Room 257

Honolulu, HI 96813

808-586-4673

<Elaine.andrade@doh.hawaii.gov>

**Sally Atwater**

Executive Director

President's Committee for People with Intellectual Disabilities

901 D St. NW.

Washington, DC 20447

202-260-1500

**Duiona Baker, M.P.H**

Associate Administrator for Women's Services

Office of the Administrator

Substance Abuse and Mental Health Services Administration

1 Choke Cherry Rd., Room 8-1009

Rockville, MD 20857

<Duiona.baker@samhsa.hhs.gov>

**Shirley Ball, M.A., Ph.D. Candidate**

Howard University

<Rball1913@msn.com>

**Patricia A. Banta, B.S.N., M.A.**

Government Grants Development Manager

Visiting Nurse Service of New York

107 East 70 St.

New York, NY 10021

212-609-1538

<Patricia.banta@vnsny.org>

**Jameta Barlow, M.A., Ph.D. Candidate**

University of North Carolina at Chapel Hill

<jnbarlow@email.unc.edu>

**Mirtha Beadle, M.P.A.**

Acting Deputy Director

Office of Minority Health

U.S. Department of Health and Human Services

**Helena R. Berger**

Chief Operating Officer

American Association of People with Disabilities

1629 K St. NW., Suite 503

Washington, DC 20006

202-457-0046

<Hberger952@aol.com>

**Vicky Best-Morris**

Equal Opportunity Specialist

Civil Rights Center

U.S. Department of Labor

200 Constitution Ave. NW., Room N4123

Washington, DC 20210

202-693-6512

<Best-morris.vicky@dol.gov>

**Alicia Fernandez Bobulinski**

Hispanic Outreach and Minority Health Director

Making a Difference Foundation

991 Kelso Ct.

Virginia Beach, VA 23464

757-375-8195

<Aliciabobulinski@yahoo.com>

**Robert A. Bobulinski**

Executive Director

Making a Difference Foundation

990 Kelso Ct.

Virginia Beach, VA 23464

757-373-7916

<Aliciabobulinski@yahoo.com>

**Rosemary Botchway**

Director, Center for Medicine Access

Primary Care Coalition of Montgomery County

8757 Georgia Ave., 10th Floor

Silver Spring, MD 20910

301-628-3448

<Rosemary_botchway@primarycarecoalition.org>

**Ruth Brannon**

Associate Director

Division of Research Sciences

National Institute on Disability and Rehabilitation Research

Potomac Center Plaza, 550 12th St. SW., Room 6054

Washington, DC 20202-2550

Ruth.brannon@ed.gov

**Dr. Sheryl Brissett-Chapman**

Executive Director

National Center for Children and Families

6301 Greentree Rd.

Bethesda, MD 20817

301-365-4480 x115

**Ceilia Brown**

Recipient Affairs Specialist

330 Fifth Ave., 9th Floor

New York, NY 10001

212-330-6352

<ONCSCEB@omh.state.ny.us>

**Virginia A. Brown, M.A.**

Program Coordinator

Program in Health Care Ethics

Howard University College of Medicine

520 W St. NW., Room 1322r

Washington, DC 20059

202-806-4898

<vabrown@Howard.edu>

**Marilyn Brundage**

Office Administrator

Office of the Secretary

Office on Disability

U. S. Department of Health and Human Services

200 Independence Ave., SW., Room 637D

Washington, DC 20201

202-401-5844

Marilyn.Brundage@hhs.gov

**Luvenia H. Butler**

Program Director

Title VI Compliance

Tennessee Department of Health

Cordell Hull Bldg., 3rd Floor

425 5th Ave. North

Nashville, TN 37247

615-741-9421

<Luvenia.Butler@state.tn.us>

**C. Regina Byers**

Chair/Volunteer

Delaware Multiple Sclerosis Society Executive Board

Governor's Advisory Council for Aging and Adults with Physical
Disabilities

606 Walker Rd.

Dover, DE 19904

302-734-8749

<creginabyers@excite.com>

**Roberta Carlin**

Executive Director

American Association on Health and Disability

110 North Washington St., Suite 340A

Rockville, MD 20850

\(301\) 545-6140 x 206

<rcarline@aahd.us>

**Angela Carter**

Associate Director of Operations

Christopher and Dana Reeve Paralysis Resource Center

636 Morris Turnpike, Suite 3A

Short Hills, NJ 07078

973-467-8270 x7214

<acarter@ChristopherReeve.com>

**Evelyn Cherow, M.P.A., M.A.**

Executive Director

Institute for Persons Who are Hard of Hearing or Deaf

National University

11355 North Torrey Pines Rd.

La Jolla, CA 92037

858-642-8822

<echerow@nu.edu>

**Rosemary Ciotti, R.N., M.S.N.**

Accessible Living Inc.

Global Organization of Feminists with Disabilities

900 North Stafford St., Suite 2322

Arlington, VA 22203

703-309-8601

<Rosemary.ciotti@erols.com>

**Jeanette Contreras, M.P.P.**

Emerging Leader--Class of 2007

Health Promotion and Disease Prevention

Indian Health Service

One Scott Circle NW., Suite 314

Washington, DC 20036

301-443-3024

<Jeanette.contreras@hhs.gov>

**Rosaly Correa-De-Araujo, M.D., M.Sc., Ph.D.**

Director

Women's Health and Gender-Based Research

Agency for Healthcare Research and Quality

540 Gaither Rd.

Rockville, MD 20850

301-427-1550

<rcorrea@ahrg.gov>

**Deborah A. Cotter, M.A.**

Senior Legislative Assistant

Public Policy Office

American Psychological Association

750 lst St. NE.

Washington, DC 20002-4242

<dcotter@apa.org>

**Paul A. Cotton, Ph.D., R.D.**

Program Director

Division of Extramural Activities

National Institute of Nursing Research

National Institutes of Health

One Democracy Plaza

6701 Democracy Blvd., Suite 710

Bethesda, MD 20892-4870

301-402-6423

<cottonp@mail.nih.gov>

**Cathleen E. Crain**

Managing Partner

LTG Associates, Inc.

6930 Carroll Ave., Suite 700

Takoma Park, MD 20912

301-270-0882

<Partners@itsgassociates.com>

**June Crawford**

Disability Program Manager

National Institute for Literacy

1775 Eye St. NW., Suite 730

Washington, DC 20006

202-233- 2064

<jcrawford@nifl.gov>

**Christina Curry, M.A.**

Executive Director

Harlem Independent Living Center

289 St. Nicholas Ave., Lower Level, Room 21

New York, NY 10027

212-222-7191 TTY

212-222-7122 Voice

<cexex@hilc.org>

**Nicole Davis**

Community Member

New Jersey Council on Developmental Disabilities

26 West Hanover Pl., Apartment 311

Trenton, NJ 08608

<nicole.davis@pcil.org>

<pat.krupka@njddc.org>

**Mother Davis**

Personal Service Assistant to Nicole Davis

Trenton, NJ 08608

<nicole.davis@pcil.org>

<pat.krupka@njddc.org>

**Pam Dickens, M.P.H.**

North Carolina Office on Disability and Health

Frank Porter Graham Child Development Institute

University of North Carolina at Chapel Hill, CB 8185

Chapel Hill, NC 27599

919-966-0871

<dickens@mail.fpg.unc.edu>

Pam Dodge

Magee-Women's Hospital

University of Pittsburgh Medical Center

300 Halket St.

Pittsburgh, PA 15213

412-641-1011

<pdodge@mail.magee.edu>

**Dr. Goulda A. Downer, R.D., C.N.S.**

Co-Principal Investigator and Assistant Professor

National Minority AIDS Education and Training Center

Howard University College of Medicine

1840 7th St. NW., 2nd Floor

Washington, DC 20059

202-865-8146

<gdowner@howard.edu>

**Dan Dubovsky, M.S.W.**

FASD Specialist

Fetal Alcohol Syndrome Center for Excellence

Substance Abuse and Mental Health Services Administration

2101 Gaither Rd., Suite 600

Rockville, MD 20850

301-527-6401

<Jdan.dubovsky@ngc.com>

**Jane Dunham**

Founder

National Minorities with Disabilities Coalition

<Jane.dunham@njddc.org>

**Capt. Edwin Galan**

Minority Health Consultant

Region VII

Office of Public Health and Science

U.S. Department of Health and Human Services

601 East 12th St., Suite S1801

Kansas City, MO 64106

816-426-3291

**Lorenzo Garcia**

Agency Liaison for Cultural Diversity Issues

Value Options New Mexico

505-346-9541

<Lorenzo.garcia@valueoptions.com>

**Tracee Garner**

Self Advocate

P.O. Box 651362

Sterling, VA 20165

703-404-0529

<Teegarner@aol.com>

**Janelle George, M.S.W., M.P.P.**

Emerging Leader Intern

Office on Disability

Office of the Secretary

U.S. Department of Health and Human Services

200 Independence Ave. SW., Room 637D

Washington, DC 20201

202-401-5844

<Jolleen.george@hhs.gov>

**Margaret Giannini, M.D., F.A.A.P.**

Director

Office on Disability

Office of the Secretary

U.S. Department of Health and Human Services

200 Independence Ave. SW., Room 637D

Washington, DC 20201

202-401-5844

<margaret.giannini@hhs.gov>

**Gwen Gillenwater**

Senior Director for Policy Outreach

American Association of People with Disabilities

629 K St. NW, Suite 503

Washington, DC 20006

202-457-0046 x31

<aapdgwen@aol.com>

**Cathie Gordon, R.N., B.S.N.**

Nursing Supervisor

Denver Health Medical Center

777 Bannock St.

Denver, CO 80204

303-436-6000

<Cathie.gordon@dhha.org>

**Dianne Hampton, M.S., C.D.V.C. III**

President and Chief Executive Officer

DLC and Associates, LLC

8358 Blaine St. NE.

Washington, DC 20019

202-399-2600

<dhampt@aol.com>

**Michelle Hart**

Co-Director

Public Policy Initiatives

Maryland Developmental Disabilities Council

217 East Redwood St., Suite 1300

Baltimore, MD 21202

410-767-3686

<michelleh@md-council.org>

**Jaye Hefner, M.D.**

Instructor in Medicine

Comprehensive Healthcare Center for Women with Disabilities

Beth Israel Deaconess Medical Center

Harvard University

**Rev. Lenorre Hill, Ph.D., M.I.S.**

New Testament Cup Ministries

127B Bridgeton Pike, Suite 202

Mullick Hill, NJ 08062

856-223-1959

<newcupchurch@comcast.net>

**Pei-Shu Ho, Ph.D.**

Senior Research Associate

NRH Center for Health and Disability Research

102 Irving St. NW.

Washington, DC 20010

202-877-1787

<Shu.ho@medstar.net>

**Cinda Hughes**

Legislative Associate

National Congress of American Indians

1301 Connecticut Ave. NW., Suite 200

Washington, DC 20036

202-466-7767

<chughes@ncai.org>

**D.J. Ida, Ph.D.**

Executive Director

NAAPI Mental Health Associate

1215 19th St., Suite A

Denver, CO 80202

303-298-7910

<djida@naapimha.org>

**Grace Idowu, R.N., M.S.N., Ed.D.**

President

Bay Area Black Nurses Association

<graceidowu@msn.com>

**Lisa I. Iezzoni, M.D., M.Sc.**

Professor of Medicine

Division of General Medicine and Primary Care

Beth Israel Deaconess Medical Center

Harvard University

330 Brookline Ave., RO-137

Boston, MA 02215

617-667-5871

<liezzoni@bidmc.harvard.edu>

**Dr. Alice M. Jackson**

Associate Professor

Morgan State University

1609 Pebble Beach Dr.

Mitchellville, MD 20721

443-885-1954

<Ajac956@aol.com>

**Mary Jackson Scroggins**

President

My Sister's Care

112 36th St. NE.

Washington, DC 20019-2601

202-607-1883

<nekima@aol.com>

**Janice Y. Jackson, M.S.**

Executive Director

Women Embracing Abilities Network

MCIL-3011 Montebello Ter.

Baltimore, MD 21214

410-444-1400

<ablejan@aol.com>

**Amie Jackson, M.D.**

Chair and Professor

Physical Medicine and Rehabilitation

University of Alabama at Birmingham, School of Medicine

1717 6th Ave. South

Birmingham, AL 35233

<jacksona@uab.edu>

**Leslie Jackson, Med, O.T.**

Occupational Therapist

American Occupational Therapy Association

P.O. Box 13220

Bethesda, MD 20824-1220

301-652-2682

<ljackson@aota.org>

**Daphne C. Jefferson**\
Program Director

Hybrid Care Management, Inc.

9301 Annapolis Rd., Suite 208

Lanham, MD 20706

301-429-0707

<djefferson@peoplepc.com>

**Gloria Johnson-Powell, M.D.**

Associate Dean for Cultural Diversity

Professor of Psychiatry and Pediatrics

Director, Center for the Study of Cultural Diversity in Healthcare

Director, Comprehensive Center on Minority Health and Health Disparities

University of Wisconsin School of Medicine and Public Health

Health Sciences Learning Center

750 Highlight Ave., Suite 4240

<gljohnsonpow@wiscmail.wisc.edu>

**Wanda K. Jones, Ph.D.**

Deputy Assistant Secretary for Health (Women's Health)

Office on Women's Health

Office of the Secretary

U.S. Department of Health and Human Services

200 Independence Ave., SW.

Washington, DC 20201

**Sandra Jowers-Barber, Ph.D.**

Urban Affairs Social Sciences and Social Work

University of the District of Columbia

4200 Connecticut Ave. NW.

Bldg. 41, 4th Floor, Room 413-08

Washington, DC 20008

202-274-5797

<sjowers@verizon.net>

**Katsumi Kenaston**

Alaska Mental Health Consumer of Color

1281 East 19th Ave., C301

Anchorage, AK 99501

907-272-8216

<kenastonkatsumi@yahoo.com>

**Kevin King**

Vice President and Treasurer

Institute for the Study of Disadvantage and Disability

70 Lenox Pointe NE.

Atlanta, GA 30324

**Catharine A. Kopac, R.N., Ph.D.,** **C.G.N.P.**

Associate Professor, Nurse Ethicist

School of Nursing and Health Studies

Georgetown University

3700 Reservoir Rd. NW.

Washington, DC 20057

202-687-2690

<kopacc@georgetown.edu>

**Sarah Larson**

Program Planning Analyst

Visiting Nurse Service of New York

108 East 70 St.

New York, NY 10021

212-609-7563

<Susan.larson@vnsny.org>

**Brenda Leath, M.H.S.A.**

President

National Consortium for African American Children

<Leathbrenda757@aol.com>

**Marie-Michele Leger, M.P.H., P.A.-C.**

Director

Clinical and International Affairs

American Academy of Physician Assistants

950 North Washington St.

Alexandria, VA 22314

703-836-2272 x3104

<mleger@aapa.org>

**Jean M. Lynn, R.N., M.P.H., O.C.N.**

Outreach Director

Cancer Expert Corps

Radiation Research Program

Clinical Monitoring Research Program

National Cancer Institute

6130 Executive Blvd., Room 6020

Rockville, MD 20892-7440

301-435-9022

**Terrence Mahoney**

Student (Junior)

Catholic University

<58mahoney@cua.edu>

**Jeanne Mahoney**

Providers Partnership Project

American College of Obstetricians and Gynecologists

409 12th St. SW.

Washington, DC 20024

202-314-2652

<Jmahoney@acog.org>

**Tracy Mann**

Dissemination Coordinator

Center for Disabilities

University of Delaware

166 Graham Hall

Newark, DE 19716

302-831-3150

<tlm@udel.edu>

**Megan G. Marks, Ph.D.**

Director, Contracts and Grants

UPMC

Forbes Tower

200 Lothrop St., Suite 1005a

Pittsburgh, PA 15213

412-647-1660

<marksmg@upmc.edu>

**Lucretia McClenney**

Director

Center for Minority Affairs

U.S. Department of Veterans Affairs

Washington, DC

202-273-6708

<Aleta.copeland@va.gov>

**Mat McCollough, M.P.A**

Program Specialist and Grant Manager

Association of University Centers on Disabilities

101 Wayne Ave., Suite 920

Silver Spring, MD 20910

301-588-8252 ext 214

<mat@AUCD.org>

**Donti McField**

Training Specialist

Mental Retardation and Developmental Disabilities Administration

25 M St. SW., Second Floor

Washington, DC 20002

202-727-2224

<Donti.mcfield@dc.gov>

**Patricia McManus, Ph.D., R.N.**

Executive Director

Black Health Coalition of Wisconsin Inc.

2801 West Wisconsin Ave.

Milwaukee, WI 53208

414-933-0064

<BHCPMc@aol.com>

**Merle McPherson, M.D.**

Office on Disability

Office of the Secretary

U.S. Department of Health and Human Services

200 Independence Ave., Room 637D

Washington, DC 20201

202-401-5844

**Beaura Mensah**

Office of Minority Health and Health Disparities

Maryland Department of Health and Mental Hygiene

201 W. Preston St., Room 500

Baltimore, MD 21201

410-767-2301

<bmensah@dhmh.state.md.us>

**Linda E. Miller**

Program Coordinator and Domestic Violence Advocate

Rehabilitation Institute of Chicago

345 E. Superior, Room 1635

Chicago, IL 60611

312-238-7238

<Lmiller@ric.org>

**Leslie Miller-Hanrahan**

Vice President, Education and Research

Lupus Foundation of America

2000 L St. NW., Suite 710

Washington, DC 20036

202-349-1175

<hanrahan@lupus.org>

**Ann Mitchell Sackey**

Executive Director

Greater Philadelphia Federation of Settlements

100 North 17th St., Floor 5

Philadelphia, PA 19103

215-568-5820

<amsackey@greatsettlements.org>

**Lisa M. Montney, Ph.D.**

Science Policy Analyst

Science Policy and Planning Branch

National Institute on Deafness and Other Communication Disorders

Building 31, Room 3C27, 31 Center Dr.

Bethesda, MD 20892

**Kelly Nagel**

Public Health Liaison

North Dakota Department of Health

701-252-8130

<kjnagel@state.nd.us>

**Susanna Nemes, Ph.D.**

President and CEO

Social Solutions International Inc.

301-774-0897

<snemes@socialsolution.info>

**Clarissa Netter**

<cnethopte@yahoo.com>

**Ruby V. Neville, M.S.W., L.G.S.W.**

Public Health Advisor

Center for Substance Abuse Treatment

Substance Abuse and Mental Health Services Administration

240-276-2902

<ruby.neville@samhsa.hhs.gov>

**Acquanetta Newson**

Disability Program Manager

Office of Civil Rights

U.S. Department of the Interior

1849 C St. NW., Mail stop 5230

Washington, DC 20240

<Acquanetta_newson@ios.doi.gov>

**Maria Nunez**

Director, Day Services and Supported Employment

Community Connections

Washington, DC

202-281-2952

<mnunez@ccdc1.org>

**Kathleen S. O'Connor, M.P.H.**

Survey Statistician

Division of Health Interview Statistics

National Center for Health Statistics

331 Toledo Rd., Room 2114

Hyattsville, MD 20782-2003

301-458-4181

<Kdo7@cdc.gov>

**Marlene Perkins**

Director, Membership

United Spinal Association

5000 Wissahickon Ave., P.O. Box 42938

Philadelphia, PA 19101-2938

215-381-3037

<mperkins@unitedspinal.org>

**Connie Pledger, M.D.**

<Connie.Pledger@ed.gov>

**Suki Ports []{.mark}**

<sukifhp@crenyc.org>

**Frances S. Priester, J.D.**

Director

Office of Consumer and Family Affairs

District of Columbia Department of Mental Health

64 New York Ave. NE., 4th Floor

Washington, DC 20002

202-673-4377

<Frances.priester@dc.gov>

**Jennifer Ragins**

School Health Policy Officer

District of Columbia Public Schools

825 North Capitol St. NW.

Washington, DC 20001

202-442-5042

<j.ragins@worldnet.att.net>

<jennifer@k12.dc.us>

**Alisha Raiford-Hall**

Training Administrator I []{.mark}

NCC Office of Training and Professional Development

Delaware Division of Developmental Disabilities Services

621 Chapman Rd., Suite 201

Newark, DE 19702

302-369-2186 x255

<alisha.raiford-hall@state.de.us>

**Otelio S. Randall, M.D.**

Professor of Medicine

Howard University Hospital

Suite 6-C11

Washington, DC 20060

<osrandall@howard.edu>

**Melinda Ray, R.N., M.S.N.**

Director of Public Affairs

AWHONN

2000 L St., Suite 740

Washington, DC 20036

**Myisha Reed, B.A.**

Project Director

California Foundation for Independent Living Center

1029 J St., Suite 120

Sacramento, CA 95814

916-325-1690

<myisha@cfilc.org>

**Samuel Rhames, Jr.**

Program Specialist/EEO Specialist

Civil Rights Center

U.S. Department of Labor

N4123, 200 Constitution Ave. NW.

Washington DC 20210

202-693-6566

<Rhames.samuel@dol.gov>

**Dr. Elise Riley**

Medical Director

Holy Cross Health Center Clinic

Silver Spring, MD

301-754-7473

<rileye@holycrosshealth.org>

**Valerie Rochester**

Hinton Hoytt & Associates

6930 Carroll Ave., Suite 820

Takoma Park, MD 20912

301-891-9165 x104

<vlr@hintonhoytt.com>

**Gerlene Ross, Ph.D.**

Director

Center for Disability and Socioeconomic Policy Studies

Howard University Research and Training Center for Access

**Leslie Rubin, M.D.**

Visiting Scholar

Department of Pediatrics

Morehouse School of Medicine

776 Windsor Parkway

Atlanta, GA 30342

404-303-7247

<lrubi@emory.edu>

**Deborah Russell**

Assistant Director, Community Advocacy

Liberty Resources Inc.

1341 North Delaware Ave., Suite 105

Philadelphia, PA 19125

<RussDebT@aol.com>

**Susan Russell, M.S.A.**

Public Health Advisor

Office on Women's Health

Office of the Secretary

U.S. Department of Health and Human Services

200 Independence Ave. SW.

Washington, DC 20201

202-690-5414

<srussell@osophs.dhhs.gov>

**Peggy Schmidt**

Office for Civil Rights

U.S. Department of Health and Human Services

200 Independence Ave. SW.

Washington, DC 20201

**Harvey A. Schwartz, Ph.D., M.B.A.**

Senior Advisor, Priority Populations

Agency for Healthcare Research and Quality

540 Gaither Rd.

Rockville, MD 20850

301-427-1552

<hschwart@ahrq.gov>

**Francisco Semiao, M.S., M.P.H.**

GW Cancer Institute

Ross Hall

2300 Eye St. NW., Suite 514

Washington, DC 20037

202-994-2062

<canpfs@gwumc.edu>

**Darlene Sewell**

**Debra Shabas, M.D.**

Chief

Women's Center at Premier Healthcare

460 West 34th St.

New York, NY 10001

<Dshabas@aol.com>

**Candace Shelton**

Senior Native American Specialist

FASD Center for Excellence

2240 East Kleindale

Tuscon, AZ 85719

520-881-8182

<canshelton@aol.com>

**Smallwood**

<Smallwood611@aol.com>

**Jean Smith**

Advocate

New Testament Cup Ministries -- DAPSAR

127B Bridgeton Pike, Suite 203

Mullick Hill, NJ 08062

856-223-1959

<boltemple@yahoo.com>

**Annette Solomon, L.I.C.S.W., A.C.S.W.**

Training Coordinator

Mental Retardation and Developmental Disabilities Administration

1453 Potomac Heights Dr.

Ft. Washington, MD 20744

202-673-4557

<Annettem.solomon@dc.gov>

**Lisa Summers, C.N.M., Dr.P.H.**

Director, Professional Services

American College of Nurse-Midwives

8403 Colesville Rd., Suite 1550

Silver Spring, MD 20910-6374

240-485-1840

<lsummers@acnm.org>

**Dr. Nathaniel Tashima**

Managing Partner

LTG Associates, Inc.

6931 Carroll Ave., Suite 700

Takoma Park, MD 20912

301-270-0883

<Partners@ltgassociates.com>

**Henrietta Terry**

Public Health Advisor

Office on Women's Health

U.S. Department of Health and Human Services

200 Independence Ave. SW.

Washington, DC 20201

**Doris Turner**

Chief

Center for Minority Health Services

Department of Illinois Public Health

**Jacqueline Walters**

<Jxw2@psu.edu>

**Mei-ling Wang, Ph.D., M.P.H.**

Associate Professor, University of the Sciences in Philadelphia

Director, Center of Global Health and Development

Co-director, WHO Social Exclusion Knowledge Network

267-971-7272

<m.wang@usip.edu>

**Carol Watkins**

Public Health Analyst, Health Disparities

Office of the Administrator

Substance Abuse and Mental Health Services Administration

1 Choke Cherry Rd., Room 8-1002

Rockville, MD 20857

<Carol.watkin2@samhsa.hhs.gov>

R**ita A. Webb, A.C.S.W., D.C.S.W.**

Senior Policy Associate

Human Rights and International Affairs Department

National Association of Social Workers

750 First St. NE., Suite 700

Washington, DC 20002

202-336-8233

<rwebb@naswdc.org>

**Carol West, M.S.W.**

Social Worker

Clinical Services Division

Mental Retardation and Developmental Disabilities Administration

429 O St., Room 206

Washington, DC 20001

202-673-4402

<Carol.west@dc.gov>

**Brenda Williamson, M.A., C.T.H.E.**

Primary Care Medical Education Branch

Division of Medicine and Dentistry

Bureau of Health Professions

Health Resources and Services Administration

5600 Fishers Lane\
Rockville, MD 20857

301-443-6821

**Greta Winbush, Ph.D.**

Associate Professor

Social and Behavioral Sciences Department

Central State University

Wilberforce, OH 45384

937-376-6463

<Gwinbush@centralstate.edu>

**Imani Woody**

Training Specialist

National Legal Training Project

AARP Foundation

Washington, DC

202-434-862

<jwoody@aarp.org>

**Samantha Wynn-Kreshover**

Student (Junior)

Boston University

703-855-0285

**Victoria Zhang, M.D.**

Medical Director, Rusk Institute of Rehabilitation Medicine

New York Downtown Hospital

Clinical Assistant Professor, New York University Rusk Institute of
Rehabilitation Medicine

## Appendix B --- Concept Paper

National Leadership Summit on Eliminating Racial and Ethnic Disparities
in Health

United States Department of Health and Human Services

Office on Disability, Office on Women's Health

**Pre-Conference**

**Addressing the Healthcare and Wellness Needs of Women of Color with
Disabilities**

***"Minding the Gap: Access, Availability, and Services"***

**Description**

The Office on Disability in the U.S. Department of Health and Human
Services (DHHS) and its partners; the Office on Women's Health, DHHS;
the Office of Minority Health, DHHS; and the ANCOR Foundation,
Alexandria, VA, will host a Pre-Conference to the National Leadership
Summit on Eliminating Racial and Ethnic Disparities in Health, hosted by
the Office of Minority Health, DHHS, on Sunday, January 8, 2006. The
Pre-Conference, "Minding the Gap", will address health disparity issues
unique to women of color (African American, Asian, Latino, American
Indians and Alaskan Natives) with disabilities in the areas of *access,
availability, and services* and incorporate the subject of cultural
sensitivity and cultural competency into the health disparity issues
affecting this population. This Pre-Conference also represents a timely
opportunity for advancing the development of a national comprehensive
action plan, much of which will relate to the recently published
"Surgeon General's Call to Action to Improve the Health and Wellness of
Persons with Disabilities".

**Purpose**

There are 7.3 million individuals with disabilities, ages 15 to 64, who
are persons of color. The Pre-Conference will address challenges related
to access, availability, and services to women of color with
disabilities:

-   Why do barriers to appropriate healthcare, specialized medical
    personnel and equipment, as well as culturally sensitive and
    competent healthcare professionals and facilities exist for this
    population?

-   Why is the research and data on women of color with disabilities
    limited and anecdotal?

-   Why are women of color with disabilities misdiagnosed, mismanaged,
    and undertreated?

This "Minding the Gap" Pre-Conference will result in a national
comprehensive action plan that addresses the *access, availability, and
services* barriers, which identify solutions that preclude women of
color with disabilities from receiving essential healthcare and wellness
services. This action plan will help women of color experience improved
healthcare and wellness access, availability, and services.

**Pre-Conference Agenda**

The Pre-Conference is a four-step process:

**[Step One]{.underline}**

Panel experts will present evidence-based and best practices shown to
address health disparity issues unique to women of color with
disabilities in the areas of access, availability, and services as well
as ethnic sensitivity and cultural competency issues. The outcomes from
these expert presentations will provide the information necessary to
develop quality recommendations for a comprehensive action plan.

**[Step Two]{.underline}**

Pre-Conference participants will engage in an interactive workshop
discussion to develop recommendations for a comprehensive action plan
that addresses the healthcare and wellness needs unique to women of
color with disabilities. Each participant will be assigned to one of
three workgroups based on their area of expertise and experience. Each
workgroup will develop specific recommendations that address healthcare
and wellness issues.

**[Step Three]{.underline}**

Facilitators will summarize the workgroups' recommendations to the
pre-conference participants.

**[Step Four]{.underline}**

All conference attendees will participate in developing the national
comprehensive action plan based on the workgroups' recommendations.

**Outcomes**

This Pre-Conference will result in:

-   An action plan providing the Office on Disability with a
    comprehensive set of recommendations to address and promote the
    healthcare issues of women of color with disabilities as well as
    responding to the Surgeon General's Call to Action.

-   A White Paper identifying the actions needed to comprehensively
    address racial and ethnic disparities in healthcare and wellness
    access for women of color with disabilities.

## Appendix C --- Pre-Conference Agenda

**Addressing the Healthcare and Wellness Needs of Women of Color with
Disabilities**

***"Minding the Gap: Access, Availability, and Services"***

Sunday, January 8, 2006

Grand Hyatt Hotel

1:00 p.m. -- 6:00 p.m.

Washington, D.C.

# 1:00 - 1:05 Opening Remarks 

> **Margaret Giannini, M.D., F.A.A.P.,**
>
> *Director, Office on Disability, U.S. Department of Health and Human
> Services*

# 1:05- 1:10 Introduction of Panelists

> **Garth Graham, M.D., M.P.H.\
> ***Deputy Assistant* *Secretary for Minority Health, Office of
> Minority Health,\
> U.S. Department of Health and Human Services*

# 1:10 - 2:55 Panel Presentations

> **Wanda K. Jones, Ph.D.**, Panel Moderator
>
> *Deputy Assistant Secretary for Health (Women's Health), Office on
> Women's Health, U.S. Department of Health and Human Services*
>
> **Gerlene Ross, Ph.D.**
>
> *Director, Center for Disability and Socioeconomic Policy Studies,*
>
> *Howard University Research and Training Center for Access*
>
> Dr. Ross will focus on the research needs and issues regarding
> *services* provided to culturally diverse and low income women of
> color with disabilities. The presentation will identify most data
> collection and analysis that address the challenge of limited data for
> women of color with disabilities ages 15 to 80 and propose a data
> collection and analysis agenda that provides evidence-based research
> upon which appropriate intervention strategies can be developed and
> tested.
>
> **Jaye Hefner, M.D.**
>
> *Instructor in Medicine*
>
> *Harvard University and Beth Israel Deaconess Medical Center,*
>
> *Comprehensive Healthcare Center for Women with Disabilities*
>
> Dr. Hefner will focus on current findings regarding the optimal care
> for women of color with disabilities giving special attention to the
> impact on healthcare access, availability, and services. She will
> include a discussion on a variety of disability related issues,
> including biomedical, psychosocial, and comprehensive service needs
> and how they vary across ages 15 to 80.
>
> **Rosaly Correa de-Araujo, M.D., M.Sc., Ph.D.**
>
> *Director, Women's Health and Gender-Based Research*
>
> *Agency for Healthcare Research and Quality,\
> U.S. Department of Health and Human Services*
>
> Dr. Correa de-Araujo will focus on the current status of the quality
> of health services provided to women of color with disabilities relate
> to prevention (screening and immunizations), timeliness of care
> received, and satisfaction with care and communication with health
> care providers. Dr. Correa de-Araujo will also discuss gender
> disparities including race and ethnicity across white, African
> American, and Latino women with disabilities, opportunities for
> closing the gaps in quality, and the role of data collection and
> research/evaluation in impacting health care access challenges for
> women of color with disabilities.
>
> **Victoria Zhang, M.D.**

Medical Director, Rusk Institute of Rehabilitation Medicine at New York
Downtown Hospital; Clinical Assistant Professor, New York University
Rusk Institute of Rehabilitation Medicine

> Dr. Zhang will focus on rehabilitation medicine for women in the Asian
> population, particularly in the New York City Chinatown area. The
> presentation will address the challenges presented to the
> Asian-American women when seeking health care services. The
> presentation will also discuss the "team approach" in providing
> healthcare to the elderly in the Chinese Community.
>
> **Gloria Johnson-Powell, M.D.**
>
> *Director, Center for the Study of Cultural Diversity in Healthcare,*
>
> *Health Sciences Learning Center, University of Wisconsin Medical
> School*
>
> Dr. Johnson-Powell will focus on issues of cultural sensitivity and
> cultural competency with special attention given to their impact on
> healthcare access, availability, and services for women of color with
> disabilities, ages 15-80. The presentation will address the impact of
> "triple jeopardy" discrimination (i.e. gender, race, and disability)
> on healthcare and wellness services, individual and institutional
> challenges and barriers, including the non-profit and private sector,
> and successful and current culturally sensitive and competent
> strategies that are working in various communities.
>
> **Cinda Hughes**
>
> *Legislative Associate, National Congress of American Indians*
>
> Ms. Hughes will focus on current legislation and policy regarding
> persons with disabilities and the impact on healthcare access,
> availability, and services. The presentation will identify and discuss
> legislative gaps contributing to health disparities among women of
> color with disabilities, opportunities for closing these gaps, paying
> special attention to Native American women with disabilities, ages 15
> to 80.

# 2:55 -- 3:25 Question and Answer Session

> **J. Janelle George, M.S.W., M.P.P.**, Facilitator
>
> *Emerging Leader, Office on Disability, U.S. Department of Health and
> Human Services*

3:25 -- 3:40 Break

3:40 - 4:55 Workgroup Break-out Session

> [Workgroup #1: Access]{.underline}
>
> **Frances Ashe-Goins, Deputy Director,** Facilitator
>
> *Office on Women's Health, U.S. Department of Health and Human
> Services*
>
> [Workgroup #2: Availability]{.underline}
>
> **Jane Dunhamn,** Facilitator

Founder, National Minorities with Disabilities Coalition

> [Workgroup #3: Services]{.underline}
>
> **Brenda Leath, M.H.S.A.**, Facilitator

President, National Consortium for African American Children, Inc

> **Jameta Barlow, M.A.**, Roaming Facilitator

Ph.D. Candidate, University of North Carolina, Chapel Hill

> **Merle McPherson, M.D.**, Roaming Facilitator
>
> Health Research Services Administration
>
> This breakout session is designed for pre-conference attendees to
> [identify]{.underline} comprehensive strategies and recommendations
> regarding healthcare and wellness issues affecting women of color with
> disabilities (as presented by panelists). These strategies and
> recommendations will help to implement the pre-conference's action
> plan to address the health disparity issues unique to this population.
> The three workgroups (access, availability, and services) run
> simultaneously. Pre-conference participants are encouraged to join a
> workgroup reflecting their professional experience, clientele, and /or
> community concerns. The workgroup facilitator and recorders will be
> provided with a prepared chart to ensure uniform recording between the
> four workgroups. The time allotted for the workgroups is 1 hour and 25
> minutes.

4:55 - 5:05 Break

5:05 -5:35 Workgroup Presentations

> **Workgroup Facilitators**
>
> [Workgroup #1: Access]{.underline}
>
> **Frances Ashe-Goins,** Facilitator
>
> *Deputy Director,*

*Office on Women's Health, U.S. Department of Health and Human Services*

> [Workgroup #2: Availability]{.underline}
>
> **Jane Dunhamn,** Facilitator
>
> *Founder, National Minorities with Disabilities Coalition*
>
> [Workgroup #3: Services]{.underline}
>
> **Brenda Leath, MHSA**, Facilitator
>
> *President, National Consortium for African American Children (NCAAC),
> Inc.*

# 

5:35 - 5:50 Question and Answer Session

> **Wanda K. Jones, Ph.D.**
>
> *Deputy Assistant Secretary for Health (Women's Health),*
>
> *Office on Women's Health, U.S. Department of Health and Human
> Services*

# 5:50 -- 6:00 Wrap-Up 

> **Margaret Giannini, M.D., F.A.A.P.,**
>
> *Director, Office on Disability, U.S. Department of Health and Human
> Services*

## Appendix D --- Pre-Conference Abstract

  --------------------- ------------------------------------------------------
  **Title:**            **Workshop Addressing the Health Needs of Women of
                        Color with Disabilities**

  **Learning            The workshop will identify and address health
  Objectives:**         disparity issues that are unique to women of color
                        with disabilities. The workshop will provide awareness
                        to institutions, including medical and schools of
                        public health, health insurance providers,
                        manufacturers of health equipment, community and
                        faith-based organizations, Federal, State and tribal
                        governments, that have an impact on the lives of women
                        of color with disabilities, and have a responsibility
                        to this population group to provide the same level and
                        quality of care as provided to able-bodied women. The
                        workshop will provide tools for these institutions
                        that institutions can make a difference in the lives
                        of these women by implementing standards, educating
                        staff, and requiring this population receive the same
                        level and quality of care as the general population.

  **Issues:**           Women of color with disabilities face challenges that
                        may preclude them from accessing the healthcare
                        system. These challenges go beyond race and gender
                        issues. Access to preventive care and healthcare
                        management. Some of the challenges and barriers facing
                        women of color with disabilities include accessing
                        appropriate healthcare, the availability of
                        specialized medical equipment and personnel, and
                        culturally competent and sensitive staff and
                        institutions.

  **Description:**      The focus of the workshop is a three-step process:
                        Workshop 1 is a panel of experts identifying major
                        challenges and barriers to and within the healthcare
                        system that may prohibit or discourage women of color
                        with disabilities from seeking the care needed.
                        Workshop 2 is an interactive session where conference
                        members will have the opportunity to provide feedback
                        and input from the first workshop. This workshop
                        includes discussion for recommendations providing a
                        framework for an Action Plan to implement strategies
                        to eliminate health disparities issues challenging
                        women of color with disabilities. Workshop 3 provides
                        the steps required for implementation of the Action
                        Plan.

  **Results:**          The collaboration of Federal, State, and tribal
                        governments, community and faith-based organizations,
                        public health and medical schools, private and public
                        organizations will result in a White Paper on the
                        guidelines for racial and ethnic disparities in health
                        for women of color with disabilities.

  **Recommendation:**   The workshop discussions will provide recommendations
                        for future actions to address racial and ethnic
                        disparities in health for women of color with
                        disabilities.
  --------------------- ------------------------------------------------------

##  Appendix E --- Workgroup Information

**Purpose:**

To develop a framework for national healthcare and wellness policy that
promotes the independence and quality of life for women of color with
disabilities. The workgroups will address the barriers preventing women
of color with disabilities from receiving quality healthcare and
services.

**Goal:**

Workgroup participants will identify health disparities affecting women
of color with disabilities and develop recommendations to correct these
challenges and inequities. They will also provide the Office on
Disability with a comprehensive set of strategies that result in an
action plan that addresses the health disparity issues unique to women
of color with disabilities.

**General Information:**

There are a total of three workgroups during the breakout session. Each
workgroup will have a facilitator and two recorders (i.e. manual and
electronic). The workgroup facilitator and recorders will be provided a
prepared chart to ensure uniform recording across the different
workgroups. The time allotted for the workgroups is **1 hour and 15
minutes**. Pre-Conference attendees are encouraged to participate in
workgroups reflecting their professional experience, clientele, and/or
community concerns. Guidelines for defining *access, availability and
services* have been provided. However, workgroups are encouraged to
enhance the definitions of these terms.

**[Workgroup 1: Access]{.underline}**

**Facilitator:** Frances Ashe-Goins, Deputy Director, Office on Women's
Health,

U.S. Department of Health and Human Services

**Access** is defined as the level of contact a woman of color with
disabilities has to preventive and maintenance healthcare and wellness
resources. These resources include general and specialized healthcare
providers, medical facilities and equipment, and culturally competent
and sensitive healthcare providers and entities.

**Goal Statement:** Women of color with disabilities nationwide will
have access to preventive and maintenance healthcare and wellness, which
promote independence and exist at a level comparable to the general
population.

**[Workgroup 2: Availability]{.underline}**

**Facilitator:** Jane Dunhamn, Founder, National Minorities with
Disabilities Coalition

**Availability** is defined as the degree to which preventive and
maintenance healthcare and wellness providers, facilities, and equipment
function and obligate resources to women of color with disabilities.
This includes the amount of time these entities are situated to meet the
unique healthcare and wellness needs of this population group.

**Goal Statement:** Healthcare and wellness entities will develop
quality improvement strategies and procedures to increase the quantity,
quality, type, and time of medical services in order to reduce health
disparities impacting women of color with disabilities.

**[Workgroup 3: Services]{.underline}**

**Facilitator:** Brenda Leath, M.H.S.A., National Consortium for
African-American Children (NCAAC)

**Goal Statement:** Healthcare providers and entities will develop the
cultural sensitivity and competency needed to manage, diagnose, and
treat women of color with disabilities with self-respect.

**Services** are defined as the professional delivery of care by
healthcare and wellness entities. This includes the interpersonal and
public interaction between provider, entities, and patient and should
address the diversity that exists among women of color with
disabilities.

**Roaming Facilitators:**

Jameta Barlow, M.P.H., Ph.D. Candidate, University of North Carolina,
Chapel Hill

Merle McPherson, M.D., Senior Medical Advisor, Health Resources and
Services Administration (HRSA)

**Appendix F --- Presenters' Biographies**

**Rosaly Correa-de-Araujo, M.D., M.Sc., Ph.D.**

***Dr. Rosaly Correa-de-Araujo*** is a cardiovascular pathologist
trained at the National Heart, Lung, and Blood Institute, National
Institutes of Health. As the Director of Women's Health and Gender-Based
Research, Agency for Healthcare Research and Quality, Dr. Correa
oversees the development of a national research agenda for women and
gender issues in consultation with prominent members of the research
community and other government agencies. She serves in numerous
government and nongovernment advisory committees working on issues
related to chronic diseases in women.

Dr. Correa has numerous scientific publications in peer-reviewed
journals as well as chapters in pharmacology books. She is on the
editorial board of the *Journal of Women's Health*. Her main areas of
interest include gender-based research, disparities and quality of care
for minoritu population groups, cardiovascular disease and risk factors,
medication use and safety women and older adults.

Dr. Correa holds positions of Associate Professor at George Washington
University School of Medicine and Clinical Assistant Professor at the
University of Maryland School of Pharmacy.

**Margaret J. Giannini, M.D., F.A.A.P.**

***Dr. Margaret J. Giannini*** was appointed Director of the Office on
Disability, U.S. Department of Health and Human Services (HHS), by
Secretary Tommy G. Thompson on October 1, 2002. She serves as advisor to
the Secretary on HHS activities relating to disabilities.

Prior to becoming Director of the Office on Disability, Dr. Giannini was
appointed by President George W. Bush as the Principal Deputy Assistant
Secretary for Aging at HHS. From 1981--92, Dr. Giannini was Deputy
Assistant Chief Medical Director for Rehabilitation and Prosthetics at
the Department of Veterans Affairs, Washington, DC. There 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.
She was confirmed by the Senate in January of 1980.

Dr. Giannini, in 1950, was the first to create the largest facility for
mentally retarded and developmentally disabled persons of all ages and
etiologies in the United States and the world. The facility became the
first University Center of Excellence on Developmental Disabilities.

**Jaye Hefner, M.D., Ph.D., M.P.H.**

***Dr. Jaye Hefner*** is Medical Director for the Center for Women with
Disabilities at Beth Israel Deaconess Medical Center. After completing
four years in a doctoral program in Cardiovascular Physiology at the
University of North Texas, Dr. Hefner received her M.D. from
Northeastern Ohio University College of Medicine. She completed
residency in Internal Medicine, a fellowship in General Internal
Medicine and Women's Health, and an M.P.H. in Epidemiology at the
University of Pittsburgh Medical Center (UPMC). She went on to become
founder and Medical Director of the Comprehensive Health Care Center for
Women with Disabilities at Magee-Women's Hospital, Medical Director of
the Weight Management Center at UPMC, and Director of Women's Health,
Division of General Internal Medicine, at the University of Pittsburgh
Shadyside site.

Dr. Hefner maintains an ongoing academic affiliation as Clinical
Assistant Professor of Medicine in the Department of Physical Medicine
and Rehabilitation at UPMC. In addition to her expertise in program
development, Dr. Hefner has developed innovative women's health
educational curricula on a broad array of topics. Her major clinical
interests include comprehensive care for women with disabilities,
medical management of obesity, pain management, osteoporosis, and
headaches.

**Cinda Hughes**

***Ms. Hughes*** is a descendent of the Cherokee Nation of Oklahoma and
an enrolled member of the Kiowa Tribe. She is employed full-time as a
Legislative Associate for the National Congress of American Indians.

She is originally from Oklahoma. She worked 10 years as a Research
Assistant for the Oklahoma State Senate. While in Oklahoma, she
volunteered her efforts for a number of organizations. Her positions
included serving on the Advisory Board of Oklahoma's Office of
Handicapped Concerns as well as the Board of Directors for the American
Civil Liberties Union of Oklahoma. She was a freelance writer for
several state and national print publications. She has also produced and
hosted a local weekly Indian radio program.

In 2004, Ms. Hughes was Ms. Wheelchair America which is a position of
public advocacy.

**Gloria Johnson-Powell, M.D.**

**Gloria Johnson-Powell, M.D.,** is Associate Dean for Cultural
Diversity at the University of Wisconsin School of Medicine and Public
Health. Additionally, she is the Director of the Center for the Study of
Cultural Diversity in Healthcare as well as Professor of Psychiatry and
Pediatrics. As a child psychiatrist, she has had academic appointments
at the University of Minnesota Medical School and the Institute for
Child Development; the Neuropsychiatric Institute and Hospital at the
University of California at Los Angeles; and Harvard Medical School. Her
career has included numerous appointments to community and state task
forces as well as national commissions on mental health, health policy,
and alcohol and substance abuse.

Dr. Johnson-Powell is the recipient of many awards and commendations,
including the Rosa Parks Award in 1989 for her work in child abuse and
sexual molestation by the Martin Luther King Legacy Foundation.

**M. Gerlene Ross, Ph.D.**

***Dr. M. Gerlene Ross*** (CCC, SAS, and SDA) is Director of the Howard
University Research and Training Center for Access to Rehabilitation and
Empowerment. She is a dynamic teacher, educator, researcher, community
activist, and national motivational speaker.

She holds a Ph.D. in Speech Pathology and two master's degrees, one in
Speech Pathology and a second in Educational Administration. Previously,
she chaired a large department of Speech Pathology and Audiology at the
State University of New York at Albany, served as Bureau Chief for
Research and Innovation and Director of Training in the New York State
Education Department, provided educational consulting training services
on diversity and multicultural education, and established and directed a
private K-12 school in the City of Albany, New York.

She is a former National Institutes of Health Fellow. She was selected
by the American Council on Education as an ACE Fellow from a field of
700 candidates.

**Victoria Zhang, M.D., D.O.**

***Dr. Victoria Zhang*** graduated from Tong Ji Medical School in China
in 1988. After she came to the United States, she went to New York
College of Osteopathic Medicine and graduated in 1997. She finished her
resident training in the field of Physical Medicine and Rehabilitation
at Rusk Institute of Rehabilitation Medicine, New York University
Medical Center. In 2001, she became Medical Director and Clinical
Assistant Professor at the institute. She spends most of her time caring
for Chinese patients and providing education in the Chinese communities.

/

## Appendix G PowerPoint Presentations 

***Minding the Gap: Access, Availability, and Services***

**Gerlene Ross, Ph.D.**

***Optimal Healthcare for Women of Color\
with Disabilities***

**Jaye Hefner, M.D.**

1

***Catalyzing Quality Improvements in Healthcare Services for Women of
Color with Disability***

**Rosaly Correa de-Araujo, M.D., MSc, Ph.D.**

***Clinical Issues in Delivering Rehabilitation Services to the Asian
Chinese Community\
in New York City Chinatown***

**Victoria Zhang, M.D.**

***Addressing the Healthcare and Wellness Issues of Women of Color with
Disabilities***

**Gloria Johnson-Powell, M.D.**

***Navigating through Life on a Tightrope:\
A Look at American Indian Women\
with Disabilities***

**Cinda Hughes**

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    Perceptions of primary healthcare services among persons with
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[^4]: Agency for Healthcare Research and Quality. *National Healthcare
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[^5]: Agency for Healthcare Research and Quality. *National Healthcare
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[^6]: Moroz, A. Convalescent Care for Seniors in Lower Manhattan: An
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[^7]: Liu, G. Management of Osteoporosis: New Bone, New Strength.