|
Lift Every Voice
Modernizing Disability Policies and Programs
to Serve a Diverse Nation
NATIONAL COUNCIL ON DISABILITY
December 1, 1999
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004-1107
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
This report is also available in Spanish, Chinese,
braille, and large print, on diskette and audiocassette, and on
the Internet at the National Council on Disability's award-winning
Web page (http://www.ncd.gov).
The views contained in this report do not necessarily
represent those of the Administration, because this document has
not been subjected to the A-19 Executive Branch review process.
LETTER OF TRANSMITTAL
December 1, 1999
The President
The White House
Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD),
I am pleased to submit NCD's new report on issues affecting people
with disabilities from diverse racial and cultural backgrounds,
Lift Every Voice: Modernizing Disability Policies and Programs
to Serve a Diverse Nation. We were pleased to release the Executive
Summary of this report at the White House forum on Disability and
Cultural Diversity on July 26, 1999, the ninth anniversary of the
signing of the Americans with Disabilities Act (ADA).
As you know, there continues to be a large disparity
in employment and educational outcomes between people with disabilities
and the non-disabled population in the United States. This gap is
even more pronounced for people with disabilities who are members
of racial or ethnic minority groups. The attached report calls on
the Administration and Congress to work to close this gap by making
a concerted effort to translate the promise of ADA and other disability
laws and programs into real opportunities for children and adults
with disabilities from diverse racial and ethnic groups, their families,
and their communities. NCD stands ready to work with you and leaders
throughout your Administration and Congress to implement the recommendations
in this report.
As you have reminded us through your One America initiative,
America benefits from the diversity of our citizenry. To fully tap
this rich diversity, we must modernize our disability policies and
programs so that they are delivered in a culturally competent manner.
I look forward to your ongoing leadership to ensure that the American
dream is truly accessible to all.
Sincerely,
Marca Bristo
Chairperson
(This same letter of transmittal was sent to the President
Pro Tempore of the U.S. Senate and the Speaker of the U.S. House
of Representatives.)
LIFT
EVERY VOICE AND SING
"The Black National Anthem"
James Weldon Johnson, 1900
Lift ev'ry voice and sing,
Till earth and heaven ring.
Ring with the harmonies of Liberty;
Let our rejoicing rise,
High as the list'ning skies,
Let it resound loud as the rolling sea.
Sing a song full of the faith that the dark past has taught us,
Sing a song full of the hope that the present has brought us;
Facing the rising sun of our new day begun,
Let us march on till victory is won.
Stony the road we trod,
Bitter the chast'ning rod,
Felt in the days when hope unborn had died;
Yet with a steady beat,
Have not our weary feet,
Come to the place for which our fathers sighed?
We have come over a way that with tears has been watered,
We have come, treading our path through the blood of the slaughtered,
Out from the gloomy past,
Till now we stand at last
Where the white gleam of our bright star is cast.
God of our weary years,
God of our silent tears,
Thou who has brought us thus far on the way;
Thou who has by Thy might.
Led us into the light,
Keep us forever in the path, we pray.
Lest our feet stray from the places, our God, where we met Thee,
Lest our hearts, drunk with the wine of the world, we forget Thee,
Shadowed beneath thy hand,
May we forever stand,
True to our God,
True to our native land.
James W. Johnson originally wrote this song for a
presentation in celebration of the birthday of President Abraham
Lincoln. It was adopted as the Black National Anthem in the early
1940s.
NATIONAL COUNCIL
ON DISABILITY
MEMBERS AND STAFF
Members
Marca Bristo, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Mark S. Quigley, Public Affairs Specialist
Kathleen A. Blank, Attorney/Program Specialist
Geraldine Drake Hawkins, Ph.D., Program Specialist
Moira Shea, Senior Legislative and Economic Adviser
Allan W. Holland, Accountant
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
ACKNOWLEDGMENTS
The National Council on Disability (NCD) wishes to
express its appreciation to Sarah L. Triano, graduate assistant
at San Francisco State University's Institute on Disability, for
her assistance in drafting this report. NCD would also like to acknowledge
the contributions of participating individuals and organizations,
including members of the San Francisco State University Institute
on Disability Report Team (Jean Lin, Laura Echegary, Randolph Feliz,
David Freeman, and director/professor Paul Longmore), Kathy Abrahamson
and Kathy Knox of the Rose Resnick Lighthouse for the Blind in San
Francisco, Nancy Grant and Cheryl Wu of the Hearing Society of San
Francisco, and Steven P. Triano, president and CEO of Automated
Business Concepts, Inc., in Fremont, California.
NCD would also like to thank LaDonna Fowler of the
American Indian Rehabilitation Rights Organization of Warriors,
Mandan Kundu of the Rehabilitation Counseling Program at Southern
University and A&M College, and Paul Leung of the Department
of Rehabilitation Counseling at the University of North Texas for
their assistance.
CONTENTS
EXECUTIVE SUMMARY
I. HAVING A SEAT AT THE TABLE: BARRIERS
TO RESOURCES
A. BARRIERS TO EMPLOYMENT
B. BARRIERS TO PUBLIC ACCOMMODATIONS
C. BARRIERS TO TRANSPORTATION
D. BARRIERS TO CULTURALLY COMPETENT SERVICE DELIVERY
1. MINORITY REPRESENTATION IN DISABILITY
SERVICE PROFESSIONS
2. CULTURALLY APPROPRIATE OUTREACH
3. LANGUAGE AND COMMUNICATION BARRIERS
II. GETTING IN THE DOOR: BARRIERS TO
CITIZENSHIP
III. BEING RECOGNIZED: THE NEED FOR
ACCURATE DEMOGRAPHIC DATA
A. INTRODUCTION
B. BARRIERS TO RESOURCES
1. OVERVIEW
2. ANALYSIS
C. BARRIERS TO CULTURALLY COMPETENT
SERVICE DELIVERY
1. OVERVIEW
2. ANALYSIS
D. BARRIERS TO CITIZENSHIP
1. OVERVIEW
2. ANALYSIS
E. BARRIERS TO ACCURATE DEMOGRAPHIC
DATA
1. OVERVIEW
2. ANALYSIS
IV. CONCLUSION
V. NOTES
Appendix
EXECUTIVE
SUMMARY On July 26, 1990, President George
Bush signed into law the Americans with Disabilities Act (ADA),
one of the most sweeping civil rights laws ever enacted. During
the signing ceremony, President Bush emphasized the historic importance
of the signing of the Act by comparing it to the fall of the Berlin
Wall. "And now I sign legislation which takes a sledgehammer to
another wall," he said, "one which has, for too many generations,
separated Americans with disabilities from the freedom they could
glimpse, but not grasp. Once again, we rejoice as this barrier falls,
proclaiming together we will not accept, we will not excuse, we
will not tolerate discrimination in America." Then, as he lifted
his pen to sign ADA, Bush concluded his remarks by declaring, "Let
the shameful wall of exclusion finally come tumbling down."
Nine years later, ADA and the American disability
rights movement have produced some tangible results for many Americans
with disabilities. In towns and cities across the United States,
ADA has produced evolutionary progress in removing barriers that
exclude Americans with disabilities and their families. But for
a large segment of the population with disabilities, particularly
those from diverse racial, cultural, and ethnic communities, a shameful
wall of exclusion continues to hinder their ability to participate
fully in all aspects of American society. Whether the exclusion
stems from one's disability, one's race, one's language, one's culture,
one's ethnicity, or a combination of these, the sting of rejection
is just as painful. As we mark the ninth anniversary of the signing
of ADA, the declaration of equality made in 1990 remains hollow
for many people with disabilities from diverse cultural backgrounds
in their continuing struggle against the persistent barriers of
poverty, inequality, and dual discrimination.
On August 5, 1998, the National Council on Disability
(NCD) held a public hearing in San Francisco on "Meeting the Unique
Needs of People with Disabilities from Diverse Cultural Backgrounds."
This hearing was part of a series of hearings and forums that NCD
conducts to develop recommendations for improving the ability of
federal policies and programs to serve diverse communities effectively.
A roundtable forum in Atlanta and a hearing in New Orleans preceded
the San Francisco hearing. To encourage the participation of non-English
speakers and specifically to ensure input from the Asian/Pacific
Islander and Hispanic communities, the San Francisco hearing was
conducted simultaneously in Spanish, English, and Cantonese. Although
the hearing participants were from California and Hawaii, the issues
raised have application at the national level.
In six hours of testimony at the San Francisco hearing,
more than 60 witnesses identified numerous barriers to full participation
by minority individuals with disabilities and their families.
Three main barriers emerged from the testimony:
- Having a Seat at the Table--Barriers to Employment,
Public Accommodations, Transportation, and Culturally Competent
Service Delivery.
- Getting in the Door--Barriers to Citizenship.
- Being Recognized--Barriers to Accurate Demographic
Data.
This report follows up on the groundbreaking 1993
NCD report Meeting the Unique
Needs of Minorities with Disabilities. Many of the findings
reported in 1993 remain true six years later. Notwithstanding federal
efforts to improve service delivery to minorities and other underserved
groups, grassroots consumers have told NCD that little has changed
that has resulted in tangible improvements in their day-to-day lives.
This report is not a comprehensive treatment of policy
issues affecting minorities with disabilities. Rather, it is intended
to spark dialogue about how best to learn from our experiences in
the past several years and how to bring the federal disability policy
agenda to a new level of inclusiveness and effectiveness, resulting
in better outcomes for people with disabilities from diverse cultural
backgrounds and their families. The report captures priority issues
identified by those who testified in San Francisco, many of whom
are native Spanish speakers or native Cantonese speakers. Although
the issues raised in San Francisco echoed themes NCD had heard in
the public hearings and meetings in Atlanta and New Orleans, some
of the issues raised elsewhere were not emphasized at the San Francisco
hearing, and some of the priority issues raised in San Francisco
received less attention elsewhere.
To broaden the scope of the policy agenda contained
in this and other reports that NCD has released in recent years,
NCD will host a think tank in spring 2000 to further refine a public
policy agenda that is responsive to the needs of all minorities
with disabilities, their families, and their communities. Likewise,
in winter 2000, NCD plans to issue reports on federal enforcement
of the Individuals with Disabilities Education Act (IDEA) and ADA
that will include a number of recommendations specifically geared
toward making those laws more effective for minorities with disabilities
and their families.
NCD looks forward to working with the broader disability
and civil rights communities in the coming months and years to elevate
the voices it heard in San Francisco, New Orleans, and Atlanta and
thereby make the policy landscape more inclusive and responsive
to the needs of this important population. The pages that follow
include many important recommendations for improving service delivery
for minorities with disabilities. However, NCD wishes to highlight
one recommendation in particular that has potential to enhance the
impact of current policies and programs.
NCD has learned from grassroots witnesses that the
best way to empower minorities with disabilities and their families
to take full advantage of federal laws, programs, and services is
to provide them with easy-to-understand, culturally appropriate
information about what their rights are under various federal laws
(e.g., ADA, the Rehabilitation Act, IDEA, the Fair Housing Act)
and how best to exercise those rights when a violation occurs.
NCD recommends that an interagency team composed
of representatives from the departments of Education, Labor, Health
and Human Services, Justice, and Housing and Urban Development,
along with the Equal Employment Opportunity Commission, Small Business
Administration, and Federal Communications Commission, develop and
implement a large-scale outreach and training program targeted to
people with disabilities from diverse cultural backgrounds and their
families that will provide such information directly to the target
audiences through a series of forums, workshops, and seminars across
the country. These trainings should be repeated on a regular basis
so that new people are trained each year and materials routinely
updated.
This interagency team should work with disability
communities, minority communities, other disability, minority, and
religious organizations, and other interested organizations to develop
a workplan, timetables, and appropriate consultation as it begins
its work. In addition, NCD recommends that the interagency team
recruit, train, and contract with a core group of people with disabilities
from diverse cultural backgrounds and their family members to help
develop the written materials and programs that will be used for
the trainings, translate them into different languages with awareness
of the cultural appropriateness of terminology, and conduct the
trainings once the materials are produced. The federal partners
should make efforts to include and accommodate often-overlooked
groups among the people to be trained and include young adults with
disabilities, people with disabilities living on Indian reservations
and in other rural or isolated locations, people with mental disabilities,
and people with limited English proficiency. Finally, NCD recommends
that the federal partners eliminate any potential financial barriers
to participation so that the population trained will truly represent
the population to be served.
I.
HAVING A SEAT AT THE TABLE: BARRIERS TO RESOURCES
A. BARRIERS TO EMPLOYMENT
NCD found in 1993 that "persons from minority backgrounds
with disabilities...do not have appropriate training and career
development opportunities." NCD believes this finding is still applicable
today. On the basis of the low employment numbers for minorities
with disabilities and the testimony presented at the 1998 NCD hearing
in San Francisco, it is apparent that minority individuals with
disabilities still have tremendous difficulty gaining access to
culturally appropriate job training and career development opportunities.
Although all people with disabilities confront these barriers, the
barriers are more persistent and more pronounced for people with
disabilities from diverse cultural backgrounds.
While the labor force participation rate for people
18 to 64 years old who do not have disabilities is nearly 83 percent,
it is only about 52 percent for those with disabilities, and only
about 38.6 percent for non-Whites with disabilities. For people
with severe disabilities, the labor force participation rate is
about 30 percent for Whites, 21.2 percent for Hispanics, and 17.8
percent for Blacks.
On the basis of the testimony and data reviewed, it
seems that in spite of the Rehabilitation Cultural Diversity Initiative
begun in 1992, significant racial disparities persist in the delivery
of vocational rehabilitation services. In California, these disparities
are particularly apparent in the areas of job training and placement
services. Moreover, minority individuals with disabilities often
have tremendous difficulty obtaining employment with minority-owned
businesses because of the stigma attached to disability within many
minority communities. In some racial and ethnic communities, as
in some White communities, people with disabilities are still perceived
as bad for business, as not worth investing in as employees or courting
as customers, and in some cases as bearers of bad luck.
NCD's 1993 finding that "persons from minority backgrounds
with disabilities...are unable to take full advantage of ADA and
other disability policies because of a lack of economic opportunity"
is still applicable today. According to witnesses at the San Francisco
hearing, few opportunities are available to minority individuals
with disabilities for economic independence, particularly entrepreneurial
opportunities. In seeking employment, many minority individuals
with disabilities encounter significant language and communication
barriers, often the direct result of discrimination based on fear
and ignorance.
Family members of minority individuals with disabilities
have unique needs and confront unique barriers to employment, such
as lack of after-school childcare, that have a direct impact on
the provision of services for the member with a disability. For
the most part, these needs of family members of minority individuals
with disabilities have not been incorporated into the larger disability
policy agenda, and this failure has had adverse effects on the lives
of minority-group members with disabilities.
Recommendations for Improving Employment Opportunities:
- The Department of Labor (DOL), the Small Business
Administration (SBA), and the Department of Education should expand
funding for culturally appropriate job training and career development
opportunities and should require all federally funded programs
to demonstrate their ability to meet the language, culture, and
disability needs of the whole population in their service areas.
- The Rehabilitation Services Administration (RSA)
should address the racial disparities apparent in the vocational
rehabilitation system, particularly in the areas of job training
and placement services.
- RSA should strengthen and increase the number
of interventions outlined in Section 21 of the Rehabilitation
Act, which requires vocational rehabilitation agencies to take
action to better address the needs of underserved groups within
their service areas.
- RSA should conduct compliance reviews of all
state departments of rehabilitation to determine the extent to
which their efforts to comply with Section 21 of the Rehabilitation
Act have produced better outcomes for minorities with disabilities
in their state.
- The SBA, working with the Presidential Task
Force on Employment of Adults with Disabilities, should provide
more entrepreneurial opportunities for minority individuals with
disabilities to promote economic independence.
- Federal, state, and local policy makers should
incorporate the unique needs of family members of minority individuals
with disabilities into the larger disability policy agenda, particularly
in the area of employment.
One barrier to employment for family members of minority
children with disabilities that was mentioned repeatedly at the
San Francisco hearing was the lack of accessible, affordable, and
integrated childcare and after-school programs. Very few after-school
programs are available in California, let alone programs that are
affordable, integrated, and accessible. The programs that do meet
these criteria tend to have waiting lists of a year or longer. Even
where programs do exist, they are rarely staffed with employees
trained to work with children of varied abilities and from different
cultural backgrounds.
The lack of accessible, affordable, and integrated
childcare and after-school programs forces parents of minority children
with disabilities to forgo valuable employment opportunities. Parents
who cannot afford to stay home with their children testified about
turning to extreme measures, including locking their disabled children
in their rooms--a practice that was noted by a substantial number
of witnesses at the 1998 hearing. Put simply, the childcare shortage
in California and other states has reached crisis proportions for
low-income parents of children with disabilities, many of whom are
minorities.
Recommendations for Improving Access to Childcare:
- The Department of Justice (DOJ) should place
a high priority on investigations to assess compliance with ADA
Title III mandates for access among social service center establishments
serving children.
- The Departments of Education and Justice should
place a high priority on investigations of school district compliance
with IDEA least restrictive environment requirements in the implementation
of district-provided after-school programs.
- Congress should appropriate funding to increase
the supply of accessible, affordable, and integrated childcare
and after-school programs and should require that all federally
funded programs not only meet federal disability access standards
but also demonstrate the capacity to meet the language, cultural,
and disability needs of their entire service population.
- The Departments of Education, Justice, and Health
and Human Services (HHS), including the federally funded legal
services programs and protection and advocacy systems, should
increase outreach efforts to parents of minority children with
disabilities regarding their rights under ADA, IDEA, section 504
of the Rehabilitation Act, the Fair Housing Act, and other federal
disability civil rights laws.
B. BARRIERS TO PUBLIC ACCOMMODATIONS
NCD's 1993 finding that "persons from minority
backgrounds with disabilities...have greater difficulty...gaining
access to public accommodations...than do other Americans with disabilities"
is still applicable today. More than 20 percent of the witnesses
who testified at the San Francisco hearing said they confronted
multiple barriers when trying to gain access to public accommodations
such as restaurants, markets, and other local establishments, and
that this often occurred in their own cultural communities (such
as Chinatown in San Francisco). Minority individuals with disabilities
and their family members who testified attributed the continued
lack of access to public accommodations to the lack of compliance
with existing access mandates in Title III of ADA and to the lack
of awareness of those requirements among protected individuals and
covered entities in minority communities.
Serious gaps exist in the legal protections afforded
minority individuals with disabilities and their families, particularly
in the area of access to public accommodations. Unlike IDEA, which
has specific language supporting the rights of ethnic minority families
whose primary language is not English, ADA and most other disability
laws and policies fail to address the unique language and communication
needs of minority individuals with disabilities and their families
for whom English is a second language. Moreover, many American Indian
tribes have no civil rights law for tribe members with disabilities.
Recommendations for Improving Access to Public Accommodations:
- Congress should require federal enforcement
agencies such as DOJ, the Equal Employment Opportunity Commission
(EEOC), the Department of Transportation (DOT), and the Department
of Housing and Urban Development (HUD) to demonstrate their effectiveness
in serving people with disabilities from diverse cultural backgrounds.
- Federal enforcement agencies should work together
to develop a multiagency outreach and technical assistance strategy
that would constitute a national campaign to increase knowledge
of civil rights protections and how to file complaints among protected
communities, focused on underserved groups such as language, racial,
and ethnic minorities, youth, and rural residents with disabilities
and their families.
- Congress should ensure that civil rights enforcement
agencies have adequate financial and staffing resources to address
the needs of their entire service areas effectively.
- Congress and the Bureau of Indian Affairs should
provide federal financial support and assistance for the development
of tribal disability rights legislation.
C. BARRIERS TO TRANSPORTATION
NCD's 1993 finding that "persons from minority backgrounds
with disabilities...have greater difficulty...gaining access to...transportation
than do other Americans with disabilities" is still applicable today.
Nearly one in five witnesses who testified at the hearing in San
Francisco said they encountered multiple barriers.
One issue brought up repeatedly at the hearing was
the perceived unwillingness on the part of public transportation
personnel to accommodate minority individuals with disabilities
and implement existing requirements for access to public transportation.
Several parents who testified at the hearing said this problem is
especially acute for minority children with disabilities. According
to these parents, public transportation personnel have been unwilling
to assist minority children with disabilities in getting on and
off the bus and in finding the appropriate stop. Minority individuals
with disabilities who speak English as a second language or who
do not speak English at all face additional language and communication
barriers when attempting to use public transportation. Some respondents
testified that public transportation personnel are less helpful
to these minority individuals who speak limited or no English.
The number of transportation options available to
minority individuals with disabilities who live in isolated areas
and rural communities is limited, especially in the Pacific Islands.
Although most Americans with disabilities occasionally have to wait
a long time for public transportation, witnesses at the San Francisco
hearing asserted that because of their disability and racial identity,
drivers were even less likely to pick them up. Witnesses said they
had sometimes been forced to wait four to six hours before public
transportation personnel would finally stop and pick them up, and
as a result of this discrimination they missed important medical
or other appointments.
Recommendations for Improving Access to Transportation:
- DOT and/or DOJ should investigate the extent
to which local compliance with ADA transportation requirements
is influenced by race and ethnicity.
- Congress should ensure that transportation civil
rights enforcement agencies have adequate financial and staffing
resources to maintain an adequate presence with covered transportation
entities to ensure compliance.
- DOT should make funds available for local transportation
providers to offer ongoing diversity and disability awareness
training for all public transportation personnel, as well as specific
training on the public transportation provisions of ADA.
- DOT should create incentives for local transportation
providers to increase efforts to hire bilingual public transportation
personnel in service areas with high concentrations of non-English
speakers.
D. BARRIERS TO CULTURALLY COMPETENT
SERVICE DELIVERY 1. Minority Representation
in Disability Service Professions
NCD's 1993 finding that one of the main barriers to
culturally competent service delivery for minority individuals with
disabilities is the lack of minority representation in disability
service professions is still applicable today. Half of the participants
at the San Francisco hearing testified about the difficulty they
have in getting culturally competent services because of the lack
of minority individuals in disability service professions.
One area where the lack of minority representation
is particularly apparent is disability-related counseling services.
Several respondents at the hearing stressed the tremendous need
for cultural identification between clients and counselors in the
provision of culturally appropriate counseling services. In a recent
national study funded by the National Institute on Disability and
Rehabilitation Research (NIDRR), 82 state rehabilitation agencies
(general and blind) were surveyed about the racial and ethnic composition
of their workforces. Within the 56 agencies responding, the aggregate
breakdowns of their staffs were 87.4 percent Caucasian American,
7.7 percent African American, 1.9 percent Hispanic American, 2.9
percent Asian American and Pacific Islander, and 0.1 percent other.
Within district offices, which tended to have lower salaries across
the board, the staffs were reported as 79.5 percent Caucasian American,
13.3 percent African American, 4.8 percent Hispanic American, 1.7
percent Asian American and Pacific Islander, and 0.5 percent Native
American. The same study found that professionals of minority backgrounds
are significantly underrepresented nationally.
Another area that has lacked minority service personnel
is special education. Witnesses at the hearing testified that few
bilingual/bicultural school personnel are found in special education.
According to statewide special education data, more than half (57%)
of the students enrolled in special education in California are
from minority communities, while fewer than 15 percent (14.9%) of
the special education teachers in the state are minority and almost
85 percent (84.3%) are White.
Hearing participants believe that this racial imbalance
leads to conflicting expectations and poor parent-teacher communication,
particularly in rural areas. Witnesses at the hearing also testified
that there are few, if any, special education mediators and hearing
officers of color, particularly African Americans. In the California
special education hearing offices, there are no special education
mediators of color, and only three of the eight hearing officers
are from minority communities. Furthermore, no special education
mediators or hearing officers in California are African American.
Because minority contract preferences have been deemed unconstitutional
as a result of Proposition 209, the hearing office cited above has
made no effort to conduct targeted recruitment and hiring of minority
individuals and women.
Hearing participants pointed out the lack of disability
service personnel who are not only members of racial and ethnic
minority groups, but also people with disabilities. Just because
people are bilingual or bicultural does not mean they will understand
and be sensitive to the needs of people with disabilities from minority
communities, particularly given the stigmas attached to disability
within these communities. Several witnesses who were recent immigrants
noted that this issue is further complicated by generational differences
and immigration status.
Another difficulty that affects culturally competent
service delivery is the absence of minority individuals with disabilities
in positions of decision-making power. According to witnesses at
the hearing, this problem is particularly apparent in the composition
of the general and administrative staff for California's network
of independent living centers. According to the Section 704 Report
for 1997, more than 50 percent of the general staff for the state's
independent living centers are members of minority communities,
and at least 60 percent are people with disabilities. More than
60 percent of the decision-making staff, however, are White.
Of the 18 current state independent living council
(SILC) members in California, furthermore, only 1 is a person from
a minority community. Section 705(b)(4) of the Rehabilitation Act
of 1973 requires that a majority of all SILC members be persons
with disabilities, but there is no similar requirement to ensure
appropriate minority representation.
Recommendations for Improving Diversity of Disability
Service Providers:
- The Departments of Education, HHS, and Labor
should increase incentives for minority individuals, particularly
minority individuals with disabilities, to enter disability service
professions and to be afforded educational and professional development
opportunities after entry. For example, the Department of Education
should enhance funding for scholarships funded through the Office
of Special Education and Rehabilitative Services to minority institutions
of higher education to increase the number of qualified graduates
of culturally diverse backgrounds, especially those with disabilities.
- RSA and the Office of Special Education Programs
(OSEP) should continue their efforts to increase the number of
minority professionals working in vocational rehabilitation, special
education, independent living, and related services, and other
disability service agencies should create similar initiatives.
For example, Rehabilitation Capacity Building initiatives should
be used to develop new programs in Historically Black Colleges
and Universities, Hispanic Serving Institutions, Native American
Serving Institutions, and Asian American/Pacific Islander Serving
Institutions, which will increase the number of qualified rehabilitation
personnel of diverse cultures in the system.
- RSA and other federal funders should require
disability service providers to have a demonstrated commitment
to workplace diversity and family-friendly policies. Along these
lines, RSA should mandate hiring of a higher percentage of graduates
(RSA scholarship recipients) of the programs mentioned above each
year to fulfill the Comprehensive System of Personnel Development
needs of every agency.
- Congress should appropriate adequate funding
to the EEOC, DOJ, HUD, DOT, and the Department of Education to
enable them to conduct disability rights training for minorities
with disabilities, their family members, and bilingual individuals,
with the goal of creating a core group of culturally diverse individuals
in every state who can train additional individuals in the requirements
of federal civil rights laws and how to use those laws when a
violation occurs.
- The Department of Education should issue a policy
memorandum mandating targeted recruitment and hiring of bilingual
and bicultural special education staff at all levels.
- OSEP, along with the Office for Civil Rights
at the Department of Education, should investigate the racial
and ethnic composition of special education mediators and hearing
officers nationally and the extent to which race and ethnicity
influence mediation and due process outcomes.
- Federal funding agencies such as the Departments
of Education, HHS, and Labor should encourage voluntary public
disclosure of diversity data for entities receiving federal funds.
In addition, federal agencies such as RSA should require an annual
cultural competency assessment for every state agency and maintain
a national database containing the following personnel information:
position, ethnicity, gender, disability status, education, certification/licensure,
and salary.
- NIDRR should fund a longitudinal study on participation
of culturally diverse professionals in the rehabilitation system.
In addition, NIDRR should fund research on such factors as rehabilitation
outcomes and educational outcomes as a function of counselor/teacher
ethnicity, gender, disability, education, and professional competency.
2. Culturally Appropriate Outreach
NCD's 1993 finding that minority individuals with
disabilities and their families are largely unaware of the services
and resources available to them because "there have been insufficient
outreach efforts" to these individuals by federal, state, and local
agencies is still applicable today. More than 4 in 10 of the participants
at the San Francisco hearing indicated that minority individuals
with disabilities and their families are still unaware of the services
and resources available because of the inadequacy of culturally
appropriate outreach efforts to these populations.
Participants in the hearing noted that there is a
tremendous lack of awareness among minority populations about the
existence of ADA, and about the specific rights that are guaranteed
under the Act. One group that has particular difficulty gaining
access to necessary information and resources is parents of minority
children with disabilities who have limited English or speak no
English. Several witnesses at the hearing said that lack of access
to information and resources substantially limits the ability of
parents of minority children with disabilities to exercise their
rights and responsibilities under the law and to obtain necessary
services for their children.
A large number of hearing participants testified that
the lack of awareness among minority individuals with disabilities
and their families indicates a failure of federal, state, and local
agencies to provide information in a way that is culturally and
linguistically appropriate and that considers the fundamental differences
between majority and minority cultures.
Many U.S. minority groups hold collectivistic value
orientations that emphasize the importance of family and interdependence.
This orientation is often in direct contrast with the U.S. majority
culture, which is highly individualistic and places a high value
on personal autonomy and independence. Because of these cultural
differences, concepts such as "individual empowerment," "self-sufficiency,"
"independent living," "control over one's life," and "minimal reliance
on others" may be isolating and even offensive to a minority individual
with a disability if they are not adequately translated and presented
in a culturally appropriate manner.
There are significant cultural differences in the
perception and impact of disability on the individual and the family.
Many U.S. minority cultures view disability as a reflection upon
and responsibility of the entire family. U.S. majority culture,
on the other hand, tends to view disability primarily as an individual
matter. According to witnesses, the sense of family responsibility
for disability within many minority cultures stems from the negative
perception of disability within those cultures. A large number of
minority group members typically view disability as a shameful or
negative reflection upon the whole family.
There is a tremendous need for education and outreach
to minority individuals with disabilities, their families, and their
communities in order to provide support to them in dealing with
the impact of disability and, in turn, to increase their awareness
about available resources and ways to integrate the experience of
disability into one's life, one's family, and one's community without
shame or unnecessary sacrifice of one's goals.
There is an equally profound need to increase awareness
about minority cultural issues within the mainstream disability
community. According to witnesses at the hearing, most disability
organizations know very little about linguistic and cultural access
for minority individuals with disabilities. Linguistically and culturally
appropriate outreach is often hampered by the failure of federal
agencies to renew grant funding specifically earmarked for this
purpose. Culturally appropriate outreach requires a long-term commitment
and a continued presence in minority communities in order to establish
the sense of trust that is necessary for outreach efforts to be
successful. When funding is not renewed, outreach efforts are substantially
and negatively affected.
Recommendations for Improving Culturally Appropriate
Outreach:
- Congress should amend the definition of "Minority
Entities" under Section 21 of the Rehabilitation Act to once again
include "Community-Based Minority Organizations," which were deleted
from the definition in the 1998 amendments.
- Congress should ask the General Accounting Office
(GAO) to investigate the cultural and linguistic appropriateness
of public information activities related to ADA, IDEA, the Fair
Housing Act, and other federal disability civil rights laws.
- The Departments of Education, HHS, HUD, Transportation,
and Labor, as well as the SBA, should require their grantees and
field offices to develop a culturally appropriate outreach plan
that takes into account the fundamental differences between majority
and minority cultures.
- NIDRR should require its research and training
centers with emphasis on minority populations to develop and test
guides describing the services provided by independent living
centers that use appropriate cultural and linguistic terminology
for diverse populations. Once these guides are produced, RSA should
require centers for independent living (CILs) and SILCs to use
these guides to improve their outreach and service delivery to
diverse populations.
- Federal agencies funding outreach efforts should
encourage initiatives directed not only toward minority individuals
with disabilities, but also toward their families and racial and
ethnic community organizations.
- Federal agencies conducting or funding outreach
should emphasize that successful outreach requires an awareness
of the perception of disability and related issues, such as independent
living, that exists within a particular cultural community.
3. Language and Communication Barriers
NCD's 1993 finding that one of the main barriers to
culturally competent service delivery for minority individuals with
disabilities is the failure to address their "language and communication"
needs is still applicable today. Approximately 4 in 10 of the participants
at the San Francisco hearing testified about their difficulty in
gaining access to culturally competent services because of language
and communication barriers.
For minority individuals with disabilities who speak
limited or no English, language barriers are a major obstacle to
obtaining necessary resources because there are so few bilingual
service providers, interpreters, and language-appropriate materials.
The lack of language capacity among many disability service providers
was noted at the hearing as significantly limiting access to information
about rights, benefits, employment programs, and other support services
and opportunities.
The need for bilingual service providers is particularly
critical in special education. According to witnesses at the hearing,
parents of children with disabilities who speak limited or no English
face significant language barriers when they attempt to enroll their
children in special education, obtain related services, and participate
in everyday, informal communication with school personnel. Among
the difficulties they mentioned were evaluating interpreter skills,
finding and paying for an interpreter with the particular language
needed, and having interpreters available when needed.
Cheryl Wu and Nancy Grant, of the Hearing Society
for the Bay Area, noted that interpreting or translation often addresses
only words and does not take into account the need for translation
of cultural concepts, behaviors and body language, expectations
about relationships, and jargon (medical terms or educational and
legal acronyms). When dealing with service providers, minority individuals
with disabilities encounter significant communication problems because
of cultural differences in body language and communication styles.
Other language and communication barriers mentioned
at the hearing include a lack of direct telephone access when answering
systems use English as the only language option, limited funding
for translation and interpretation services, and the absence of
translated materials in alternative formats such as braille, audiocassettes,
and large print.
A follow-up study conducted after the hearing by Kathy
Abrahamson and Kathy Knox, of the Rose Resnick Lighthouse for the
Blind in San Francisco, concluded that an additional language and
communication barrier for people from diverse cultural communities
who are blind or visually impaired is the absence of language-appropriate
materials available in alternative formats, particularly from government
agencies.
Recommendations for Removing Language and Communication
Barriers:
- The departments of Education, HHS, HUD, Transportation,
and Labor, as well as the SBA, should require that their field
offices and grantees conduct targeted recruitment and hiring of
minority individuals who are bilingual and bicultural, especially
minority individuals with disabilities.
- The Office of Special Education and Rehabilitative
Services should issue a policy memorandum mandating targeted recruitment
and hiring of bilingual special education staff at all levels.
- RSA should include language interpreter information
and referral as a core service at all centers for independent
living that have significant populations of non-English-speaking
people within their service areas.
- RSA should require all CILs with significant
non-English-speaking populations in their service area to develop
language and communication action plans that include the following:
- Establishing contacts within minority community
agencies who can assist in facilitating communication with ethnically
diverse populations.
- Developing a language interpreter referral database
that is available in multiple languages and alternative formats,
including the World Wide Web.
- Sending all existing or new translated materials
to the SCLC for widespread distribution to other centers for independent
living and related agencies and organizations in the state.
- Establishing sign language and other language
interpreter and translator training programs that provide instruction
on translation of cultural concepts, behaviors and body language,
expectations about relationships, and other technical disability-related
terms (medical terms, educational and legal acronyms).
- Providing language-dedicated telephone lines
in Spanish and other languages, and information in bilingual formats
on Web pages.
- The departments of Education, HHS, HUD, Labor,
and Transportation, as well as the SBA should make available adequate
funding to all field offices and grantees for translation and
interpretation services.
- Congress should ask GAO to investigate the quality
of service delivery for minority individuals with disabilities
and their families in terms of language and cultural competence.
II.
GETTING IN THE DOOR: BARRIERS TO CITIZENSHIP The
United States has a long and well-documented history of actively
discouraging and restricting the immigration and citizenship of
people with disabilities, especially those from certain racial and
ethnic communities. This historical pattern continues today through
the subtle yet equally exclusionary practice of denying immigrants
with disabilities their right to reasonable accommodations in the
naturalization process.
Following passage of the 1996 welfare reform law,
many immigrants with disabilities throughout the United States faced
the possibility of losing necessary Social Security and food stamp
benefits if they did not become U.S. citizens. In California, almost
74 percent of the legal noncitizens in the state stood to lose not
only Supplemental Security Income (SSI) and food stamp benefits,
but also Medicaid and In-Home Supportive Services (the state name
for home-based personal assistance services) as a result of categorical
eligibility requirements if they had failed to naturalize and attain
U.S. citizenship before the enactment of federal welfare reform.
At the time of the San Francisco hearing in 1998,
citizenship continued to be withheld from many qualifying immigrants
with disabilities because the Immigration and Naturalization Service
(INS) denied them reasonable accommodations and policy modifications
during three stages of the naturalization process: the naturalization
interview, fingerprinting, and the execution of a "meaningful" oath
of allegiance.
Only in the past year or so has the INS begun to take
its obligations under the Rehabilitation Act seriously. It has formed
a national working group with community-based organizations that
is helping to develop needed field guidance and policy modifications
for naturalization processing and adjudication. On April 7, 1999,
INS issued comprehensive new guidance to its field adjudicators
that is intended to simplify and streamline the review of form N-648,
which excepts persons with certain disabilities from the English
language and U.S. civics knowledge requirement for naturalization.
INS also is revising form N-400, the naturalization application,
and is planning to include a new section on the revised form that
will allow applicants to indicate that they will need a reasonable
accommodation during their interview (e.g., sign language interpreter,
home visit). In addition, INS announced a new fingerprint waiver
procedure, effective in summer 1999, waiving the fingerprint requirement
for applicants who cannot produce classifiable fingerprints because
of a disability and instead requiring that they be instructed to
obtain a local police clearance memorandum.
The April 7, 1999, memorandum also included guidance
to field adjudicators on determining whether certain applicants
with severe disabilities understand the oath of allegiance. The
guidance instructed adjudicators to communicate with the applicant
through a family member, if the family member can aid in communicating
with the applicant; to use "yes or no" questions that the applicant
might more readily be able to answer; and to accept whatever form
of communication the applicant uses, including blinks and nods.
Recommendations for Improving the Naturalization Process:
- Congress should ask GAO to conduct a study of
INS compliance with disability access mandates under federal law,
examining in part whether the changes put in place in the past
year have resolved the long-standing problems identified in this
report.
- INS should conduct training for field staff
regarding the new procedures and policies outlined in its April
7, 1999, memorandum. Such training should be completed by October
1, 1999.
- Congress should amend the Immigration and Nationality
Act to provide for a disability waiver for the oath of allegiance
requirement.
- INS should ensure timely processing of naturalization
applications for applicants with disabilities.
- The Disability Rights Sections of the Civil
Rights Divisions of DOJ, NCD, and INS should work together to
monitor implementation of INS's recent efforts to address long-standing
problems with its naturalization process regarding access for
applicants with disabilities, and to address ongoing problems
as they occur. To further this effort, DOJ should institute a
toll-free number to a central location staffed with trained multilingual
employees so that anyone having problems with accommodations in
the naturalization process could raise those issues and have the
staff take steps to address both the individual and the systemic
issues identified. This toll-free number should be publicized
in numerous languages in every INS office and on INS forms and
materials.
III.
BEING RECOGNIZED: THE NEED FOR ACCURATE DEMOGRAPHIC DATA
Over the past 30 years, the United States has seen
significant changes in the racial and ethnic makeup of its population.
Many of these changes were felt first and most powerfully in California,
a harbinger of what other large states will encounter. With the
turn of the century, California becomes the first continental state
in America with a majority population of racial and ethnic minorities.
This shift has substantial political, economic, and social ramifications.
The federally funded disability service provider network
in California will need to revisit assumptions about the prevalence
of disability among Hispanic and Asian/Pacific Islander populations
and subpopulations and the emphasis placed on service delivery for
individuals with disabilities in those communities. This need will
expand beyond California as other states undergo similar population
shifts. The importance of accurate demographic data is underscored
by the reliance on such data, particularly census data, by state
and county agencies in planning for eligible recipients under Medicare,
Medicaid, and SSI programs; by rehabilitation agencies in distributing
funds and developing programs under the Rehabilitation Act; by HUD
in distributing funds for housing for people with disabilities;
and so on. In short, all levels of government use census information
to guide the annual distribution of $180 billion in critical services
to people with disabilities and their families.
According to the national estimates, the rate of disability
in Hispanic and Asian/Pacific Islander populations is significantly
lower than for other racial or ethnic groups, including Whites.
Some researchers, however, believe that these estimates do not accurately
reflect the prevalence of disability in Hispanic and Asian/Pacific
Islander populations and subpopulations because of a variety of
socioeconomic factors and acculturation variables, including immigration
status and the perception of disability within these cultures. These
variables have an impact on the self-reported rate of disability
in Hispanic and Asian/Pacific Islander populations and subpopulations.
Service delivery systems have been developed and focused
on the needs of the majority with some added attention to African
Americans and Native Americans with disabilities. Partly for lack
of data, the needs of Hispanics and Asians/Pacific Islanders with
disabilities have been largely ignored.
Recommendations for Improving the Accuracy of Demographic
Data:
- The Census Bureau and the Bureau of Labor Statistics,
working with NIDRR and the National Center for Health Statistics,
should develop alternative methods for tracking the prevalence
of disability within racial/ethnic minority communities at the
national, state, and local levels.
- The Census Bureau should make affirmative efforts
to hire minority and bilingual individuals with disabilities as
part of the workforce that will assist with Census 2000.
- NIDRR and other federal research entities should
conduct studies that explore the intra-ethnic experience and prevalence
of disability.
NCD believes that every person with a disability,
regardless of race or ethnicity, should have the opportunity to
realize the promise of freedom and equality made in ADA. The importance
of racial and ethnic diversity must be recognized as a key component
of the disability civil rights movement in the new millennium. These
recommendations are submitted in the belief that they will promote
that recognition and begin the process of tearing down the shameful
wall of exclusion that has prevented minority racial and ethnic
individuals with disabilities and their families from participating
fully in all aspects of American society.
A. INTRODUCTION On
July 26, 1990, President George Bush signed into law one of the
most sweeping civil rights laws ever created, the Americans with
Disabilities Act. During the signing ceremony, President Bush emphasized
the historic importance of the signing of the Act by comparing it
to the recent fall of the Berlin Wall. "And now I sign legislation
which takes a sledgehammer to another wall," he said, "one which
has, for too many generations, separated Americans with disabilities
from the freedom they could glimpse, but not grasp. Once again,
we rejoice as this barrier falls, proclaiming together we will not
accept, we will not excuse, we will not tolerate discrimination
in America."1 Then, as he lifted
his pen to sign ADA, Bush exhorted, "Let the shameful wall of exclusion
finally come tumbling down."
Nine years later, as the 10th anniversary of the signing
of ADA approaches, this majestic declaration of inclusion and equality
rings true for many Americans with disabilities. For a large segment
of the population, however, and particularly for those from diverse
cultural and ethnic communities, the shameful wall of exclusion
is still a reality. The declaration of equality made in 1990 remains
hollow for these individuals as they continue to struggle against
the persistent barriers of poverty, inequality, and discrimination.
On October 21, 1992, the National Council on Disability
held a public hearing in San Francisco to determine how minority
group members with disabilities were faring under ADA. The testimony
reflected what is now a well-documented fact: that people with disabilities
from diverse cultural communities not only experience poverty and
disability at a disproportionately higher rate, they also face language,
cultural, and attitudinal barriers that significantly impede their
access to resources and accommodations. Based on these and other
findings, NCD in 1993 produced its report, Meeting
the Unique Needs of Minorities with Disabilities. In it, NCD
articulated an agenda that identified the unmet needs of minority
individuals with disabilities as a national policy priority2
and set a vision for inclusion and equality for minority group members
with disabilities in society.
About six years after the original hearings, on August
5, 1998, NCD held a second hearing in San Francisco to examine how
well ADA and other public policies related to minority communities.
NCD found that in spite of the progress made in disability policy
in the decade of the 1990s, minorities with disabilities are still
plagued by the poverty, inequality, and discrimination that they
testified about years before.
At the 1998 NCD hearing in San Francisco, 69 advocates,
people with disabilities, and their families, from diverse cultural
communities in California and Hawaii and other Pacific islands,
came forward to ask that NCD revisit the agenda it had articulated
in 1992 and work to realize immediate change so that the promises
of ADA and other disability laws would be felt in these diverse
communities. In effect, they wanted to cash in a check that had
been given to them that historic day in 1990 on the South Lawn of
the White House. When the architects of ADA wrote that "the nation's
proper goals regarding individuals with disabilities are to assure
equality of opportunity, full participation, independent living,
and economic self-sufficiency,"3
they signed a promissory note for all Americans with disabilities,
regardless of the color of their skin.
Based on the testimony of witnesses at the 1998 hearing,
it seems that America has defaulted on this promissory note to minority
citizens with disabilities. The similarities between the policy
problems that emerged in the 1992 and 1998 testimonies are a grim
reminder that the wall of exclusion still exists, and that it continues
to separate minority individuals with disabilities from the freedom
they only glimpse, but do not yet grasp.
At the 1998 hearing in San Francisco, people with
disabilities from diverse cultural backgrounds issued a challenge
to each other, as well as to their governmental representatives
and respective cultural communities--a challenge to take immediate
action, to "tear down this shameful wall" of exclusion once and
for all, and to demonstrate a commitment to profound change. In
succinct and pointed testimony, Leroy Moore, Jr., co-founder of
the Disability Advocates of Minorities Organization in the Bay Area,
took the lead in issuing this call to action:
It's up to us, not our leaders, not our ethnic
or disabled organizations, but us, to come together, organize,
let our voices be heard, and talk about racism and disabledism
within our organizations that are supposed to serve and advocate
on behalf of us....This is our issue and our time to be advocates,
be delegates and teachers of our communities and organizations.
I was here at the same conference in 1992, and I have to say very
little has changed because we the public are not taking this issue
into our own hands....Please don't let another [six] years go
by before we get back together again.
David Freeman, of the San Francisco State University
Institute on Disability, echoed this sentiment:
Everything we have done up until this point is
not enough. Simple platitudes will no longer placate us. Broad
and bold steps need to be taken. We have to go further than we
have ever gone before.
Underlying these two statements is a fierce sense
of urgency and a denunciation of the policy of gradualism that has
characterized efforts to address the unique needs of people with
disabilities from diverse cultural populations up until now. The
lessons from the 1990s make clear that the "shameful wall of exclusion"
will not come "tumbling down" through enactment of laws. Concrete
steps are needed to ensure that the unique needs of minority individuals
with disabilities and their families are adequately met. Institutional
requirements of compliance and accountability must be established
that will have the full force of the law behind them. Minority individuals
with disabilities themselves also need to heed the "call to action"
and spearhead the effort to generate change within their cultural
communities, thereby collectively altering their social status within
those communities.
The ideas and proposals that NCD discusses in the
following pages are significant because they were developed in the
spirit of this "call to action" through the assistance of a Report
Team made up of three women and three men who have a variety of
disabilities and the majority of whom are members of different ethnic
minority groups (including an Asian American, a Latina, a Native
American, and an African American).
Many of the issues at the San Francisco hearing were
consistent with issues that NCD has identified as important for
all people with disabilities, regardless of racial or ethnic identity.
For example, a large number of people testified about the dehumanizing
and degrading experience of going to a local Social Security Administration
(SSA) office to apply for benefits. Much of this unfortunate experience
was related to disability, and much was directly related to race
and ethnicity. Many individuals with disabilities, for example,
complain of a typical pattern of disrespect at SSA offices, regardless
of their racial or cultural background. In addition to this disrespect,
individuals with disabilities from diverse cultural communities
often face other challenges from SSA personnel, including a lack
of cultural competence or understanding, communication differences,
and failure to deal with cultural specifics and language needs.
Although all individuals with disabilities who are members of racial
and ethnic minority groups encounter the same challenges as other
individuals with disabilities, persons with disabilities from ethnic
populations face unique problems because of socioeconomic, cultural,
and other factors which must be addressed if they are to benefit
equally from public policies and programs.4
The primary goal of this report, therefore, is not
to identify the general issues and problems that exist for all people
with disabilities, but rather to focus specifically on the barriers
encountered by individuals with disabilities from diverse cultural
communities because of their racial and ethnic status. NCD identified
within the testimony three primary barriers to equality for people
with disabilities from minority communities. These barriers are
a lack of resources, culturally inadequate service delivery, and
inadequate and misleading demographic data.
The following pages propose specific steps to address
these barriers. This report outlines an agenda that requires immediate
attention. If implemented, this agenda will be a sledgehammer on
the "shameful wall of exclusion" that continues to exclude minorities
with disabilities from full participation in American society.
B. BARRIERS TO RESOURCES
1. Overview
This chapter discusses barriers that minorities with
disabilities confront in getting access to resources they need to
become independent, economically self-sufficient, and an integral
part of their communities. The disadvantages of ethnic and disability
status have a combined effect that is often greater than the sum
of the parts. Federal disability rights and services tend to be
monitored less closely in minority communities. Small gaps in communication
can result in major disparities in the understanding of laws.
NCD recommends that the U.S. Department of Education
strengthen efforts to include minorities with disabilities as equal
beneficiaries of all education, rehabilitation, and independent
living programs. NCD recommends that the U.S. Departments of Interior
and Justice work together to promote rights and services for Native
Americans with disabilities within Indian communities. NCD recommends
that the U.S. Department of Transportation provide more technical
assistance and public education to improve transit accessibility
in diverse cultural communities.
2. Analysis
In his testimony at the 1998 NCD hearing in San Francisco,
H. Leon Cain, of Resources for Independent Living in Sacramento,
requested that the "National Council on Disability identify any
progress that has been made" since the "previous hearing" in 1992.
The testimonies presented at the 1992 and 1998 NCD hearings in San
Francisco reveal a disturbing similarity in the issues raised. As
Leroy Moore, Jr., said in his testimony, "I was here at the same
conference in 1992, and I have to say very little has changed."
Rather than being a decade of progress, the 1990s has, in some ways,
been a decade of decline for people with disabilities from diverse
cultural backgrounds.
Evidence of this decline can be found throughout the
service delivery system, but it is most apparent in the area of
access to resources. Minority individuals with disabilities experience
tremendous "difficulty in gaining access to the resources needed
to become self-sufficient" and it remains essentially as true today
as it was six years ago. Almost 50 percent of the people who testified
at the 1998 NCD hearing identified the lack of access to resources
as the main problem facing minority individuals with disabilities
today. Although the concepts of "access" and "accessibility" are
routinely associated with issues of physical and architectural access,
when considered in the context of the unique needs of people with
disabilities from minority communities, these words take on a different
meaning. "Access" for some minority individuals with disabilities
involves not only issues of overall physical access (such as architectural,
technological, geographical, and environmental accessibility), but
also culturally defined issues of access, such as access to information,
language and communication needs, and culturally competent service
delivery. Because of these additional barriers and accessibility
issues, minority individuals with disabilities face an even greater
challenge than other people with disabilities in gaining access
to necessary resources. Judging from testimony presented in 1998,
that challenge has arguably increased in scope and intensity over
the course of the past six years.
Almost 40 percent of the people who testified in 1998
expressed difficulty in gaining access to employment; more than
20 percent had difficulty getting into public accommodations, and
another 20 percent had difficulty using public transportation. Examples
drawn from the testimony illustrate the extent of the difficulties
that minority individuals with disabilities currently face in getting
necessary resources in the areas of employment, public accommodations,
and transportation.
a) Employment
According to the report of the 1992 hearing, one major
finding was that "persons from minority backgrounds with disabilities...do
not have appropriate training and career development opportunities,"
and they "are unable to take full advantage of ADA and other disability
policies because of a lack of...economic opportunity." In order
to address this situation, NCD recommended in its 1993 report that
"appropriate funds" be given to "public agencies and private community-based
entities to develop and implement training and to provide opportunities
for economic independence for minorities with disabilities."5
One organization that acted upon this recommendation
was the Association for Retarded Citizens (ARC) in San Francisco.
In 1994, ARC San Francisco received a grant from the U.S. Department
of Education to administer a three-year demonstration project called
the "Multicultural Employment Program." According to the 1998 testimony
of Shiva Shultz, director of the program, the main focus was to
"assist immigrants with disabilities from Chinese, Filipino, Russian,
and Hispanic communities in becoming employed in integrated work
sites in the community." By taking the approach of "focusing on
the positive aspects of these immigrant cultures" and "matching
the cultural needs of individuals to their job placements," Ms.
Shultz and other Multicultural Employment Program personnel were
able to provide better "outreach, employment training, and higher
quality person-centered services" to the "unserved and underserved
populations" in question. When the funding for the Multicultural
Employment Program ended in September 1997, ARC San Francisco continued
to promote the objectives of the program through "Projects with
Industry," another grant-funded program that expanded service to
people with disabilities from African American communities. In her
testimony, Shiva Shultz said that the focus of this project is "on
getting jobs for clients in minority-owned businesses." When directly
questioned about the success of the project, however, Ms. Shultz
admitted that ARC is having difficulty placing minority group members
with disabilities in minority-owned businesses because "minority
populations are not always interested in working with individuals
with disabilities because the stigmas within the community make
it less desirable."
Ms. Shultz's last comment suggests the entrenched
nature of the barriers to employment that exist for minority individuals
with disabilities, starting at the most basic level of getting access
to job training and employment opportunities, followed by discrimination
by employers even after someone is job-ready.
People with disabilities from diverse cultural communities
still have great difficulties in finding culturally appropriate
job training and career development opportunities. An overwhelming
majority of the comments related to employment at the 1998 NCD hearing
centered on this issue. In videotaped testimony, Rudy Stefany, a
student from American Samoa, explained:
For job training and vocational rehabilitation,
I would say that I have not really seen any job training for people
with disabilities. There are probably programs available, but
I have not seen any people with disabilities out in the community
looking for jobs or getting vocational training.... I do not know
if the...private sector agencies or government departments realize
the need to provide job opportunities for people with disabilities.
It is very hard for us to get around and go out there and see
if we can get a job for ourselves.
One hearing participant from San Francisco, Wilbert
Liang, devoted his entire testimony to this subject:
I want to point out that there are not many work-related
training opportunities provided in San Francisco. We, as disabled,
need to work and live. I think the government should provide more
work opportunities and training courses for us so that we can
rely on ourselves.
Esteban Gómez, the Latino Community Services
Coordinator at the Independent Living Resource Center in San Francisco,
expounded on the need for job training and work opportunities in
his testimony, and offered a practical solution:
I would like to emphasize the need for job opportunities
for people with disabilities. I think it's probably one of the
biggest obstacles that we face. We don't have many opportunities,
and we don't have the proper training.... History tells us that
we have a great deal of problems with getting jobs. And the ones
that are actually getting jobs, they're getting jobs paid at very
low wages. Mostly minimum wages, and they don't get any benefits....
The reality is that we need Congress to offer these employers
some kind of an incentive so they could hire more people with
disabilities. It could be tax exemptions or something.... Unless
these people are willing to hire people at decent wages, prevailing
wages, they're not doing anything for us.
In oral and written testimony, Mary Kwan of San Francisco
echoed the need for effective job training and presented another
solution to promote the economic independence of minority group
members with disabilities:
The first thing I thought is to establish training
agencies. In reality, the so-called disabled have some kind of
ability in many areas. By receiving training, they can have skills
to support themselves. The second thing is to set up funds to
loan to those who have skills, so we can carry on a small business
with our ability. Just loan a small amount of money, for example,
to those who can do translating and they can open up a translation
service center, et cetera. This can help us to support ourselves
and reduce the burden to the community, and make a new work force.
They will become more confident.
Rudy Stefany also felt that promoting entrepreneurial
opportunities for minority individuals with disabilities was a viable
way to increase access to employment as well as visibility within
the community:
Some changes or recommendations that I would make
for our community down here, I would like to see a person with
a disability or a group of people with disabilities run their
own business, or run their own show, in order for them to really
stand out and make the community notice that we are here.
In addition, witnesses repeatedly described the failure
of the vocational rehabilitation system to address minority community
needs. In testimony after testimony, minority individuals with disabilities
reported the difficulties they have in finding culturally appropriate
job training and employment opportunities through the California
Department of Rehabilitation. Hector E. Mendez, executive director
of La Familia in Hayward, asserted that "rehabilitative services
available to our disabled community are almost nonexistent." Judy
Quan-Gant noted that even if rehabilitative services are available,
they are often completely ineffective:
I personally have been trying to get help to find
a job. I've been to the California Department of Rehabilitation
and they are looking down their nose at me, and just shuffling
papers here and there, and not helping me at all.
According to the 1992 Amendments to the Rehabilitation
Act of 1973, the inequitable treatment experienced by Ms. Quan-Gant,
and by other minority group members with disabilities, has "been
documented in all major junctures of the vocational rehabilitation
process."6 To address this pattern
of inequitable treatment, a new section was added to the Rehabilitation
Act in 1992, Section 21, which called for the establishment of a
Rehabilitation Cultural Diversity Initiative to improve service
delivery for minority individuals with disabilities in the state-federal
vocational rehabilitation program.
Despite the addition of Section 21, the quality and
quantity of vocational rehabilitation services for minority individuals
with disabilities in California has declined in recent years. In
July 1993, the U.S. Department of Education's Office for Civil Rights
conducted a Title VI compliance review of the California Department
of Rehabilitation's Vocational Rehabilitation Services Program and
found statistically significant racial disparities in the delivery
of vocational rehabilitation services. In response, the California
Department of Rehabilitation implemented a voluntary resolution
plan in December 1993 to "assess Departmental processes and policies
and their impact on services and vocational goal achievement for
consumers of color."7
To be fair, California statewide statistical reports
of consumer status by race do reveal modest "improvement in successful
minority client outcomes." Between 1996 and 1998, there was a 1.28
percent increase in the number of minority applicants accepted for
services, and the rehabilitation rate for minority clients increased
by as much as 1.72 percent.8 When
the statewide data are disaggregated, however, and the district
level figures are examined, a different picture emerges. Last year
in the Chico district, for example, fewer than 13 percent (12.18%)
of the applicants accepted for services were minority, while almost
88 percent (87.60%) were White. Of the clients successfully rehabilitated,
only 10.74 percent were minority, while 88.87 percent were White.9
These racial disparities are also evident in the statewide closure
data for fiscal years 1996-97 and 1997-98. For example, the most
frequent reason cited for the unsuccessful closure (status 28) of
minority clients was "failure to cooperate," but the explanation
most often cited for unsuccessful closure of White clients was "other
reasons."10 The fact that minority
clients are more frequently perceived as being "uncooperative" suggests
that the department's interventions have not been "effective in
monitoring and responding to potential service inequities," especially
inequities that exist as a result of communication difficulties
based on cultural differences.
Unfortunately, the ineffectiveness of the Department's
interventions is perhaps most evident in the area of job training
and placement services, the area that participants at the 1998 NCD
hearing described as being the most problematic. According to California
statewide reports on training and placement services for the 1997-98
fiscal year, minority clients received significantly less educational
and vocational training and job referral and placement services
than did White clients. Almost 76 percent (75.92%) of the clients
who received some type of aid from the department to attend a four-year
university were White, and fewer than 24 percent (23.70%) were minority.
This racial disparity is consistent throughout the range of academic
training provided: two-year colleges (63.71% White/ 35.82% minority);
"other academic" (60.47% White/ 39.02% minority); "business school"
(68.09% White/ 31.91% minority); "vocational school" (52.89% White/
46.50% minority). Although the racial disparities are less obvious
in the area of job referral and placement services, there is still
on average approximately a 20 percent gap between the number of
Whites and minorities receiving those services: "on the job training
services" (57.13% White/ 42.58% minority); "job referral" (57.88%
White/ 41.72% minority); "job placement" (57.50% White/ 42.14% minority);
and "miscellaneous training" (63.50% White/ 36.10% minority).11
Even if minority individuals with disabilities are
able to navigate through the vocational rehabilitation system and
gain access to necessary training and career development opportunities,
other barriers to employment still exist. It has been said that
people with disabilities from diverse cultural communities face
"double discrimination" because of the stigmas that society attaches
to both minority group status and disability. In her testimony,
Erica Li, a member of the San Francisco Chinese Blind Support Group,
pointed out how this "double discrimination" can often be tripled
for people with disabilities from minority communities whose native
language is not English. "We are minorities," she said, but "when
we look for jobs, we also come across language barriers. For example,
when being interviewed for a job, we will be told that we have too
much of an accent." Ms. Li added that "when they see a disabled
person plus a heavy accent," employers automatically assume that
the person is incapable of doing the job. They make false assumptions
about the applicant's abilities in terms of their overall physical
capability, and in terms of their specific language capacity. Ms.
Li attributed this discrimination to fear and ignorance and suggested
that "there be more education available" for employers "so that
they won't be too scared" to hire minority individuals with a disability
for whom English is a second language.
Regina Schneider agreed with Ms. Li in her testimony,
arguing that "education needs to happen at all levels" of the employment
process in order to address the whole range of barriers to employment
that exist, including those faced by family members of children
with disabilities from diverse cultural communities. Minority individuals
with disabilities and their families stressed the need to incorporate
their issues into the overall disability policy agenda.
One issue repeatedly mentioned at the hearing was
the prevalent lack of access to necessary childcare for parents
of minority children with disabilities, particularly after-school
programs. In her testimony, Sew Gan Ching, a member of the San Francisco
Chinese Family Support Group and a parent of a child with a disability,
described how this lack of access to after-school programs has directly
affected her ability to be gainfully employed:
I would like to request an after-school program
for San Francisco, that more kids can enter that program. Because
not many kids can join the program, sometimes even though there
are after-school programs available in some centers, they only
take the good students, or the ones that don't need much attention.
But like my son, he runs, jumps and attacks. They don't like to
take him. So it is very hard for the middle, lower class people
like us to get a job. In fact, I do have some abilities to work,
but I have to stay at home and can't go to work. I think it is
a pity. I used to be a nurse before. I haven't been able to achieve
things and contribute to society; instead, I have to ask for resources.
My son spent a lot of society's money. I don't think that is right.
I want very much to work. However, if there are no after-school
programs available for him, I still can't leave home to work.
I feel guilty.
Jen Sermoneta, a member of the Oakland Youth Project
for Inclusion of Minority, Low-Income, and Disabled Youth, cited
several reasons for the lack of access to after-school programs
for minority children with disabilities. To begin with, very few
after-school programs are available in California for all children,
let alone programs that are affordable, integrated, and accessible.
In addition, the programs that meet these criteria tend to have
year-long waiting lists. Existing programs are rarely staffed with
employees trained to work with children of varied abilities and
cultural communities. This circumstance presents a no-win situation
for all parties involved, but particularly for the minority children
with disabilities themselves, who end up being the true victims.12
In order to deal with the lack of access to child-care
and after-school programs, minority parents are often forced to
take drastic measures. Like Sew Gan Ching, some parents have to
stay home with their disabled children and forgo valuable employment
opportunities. Other parents cannot afford this option. Given the
reality of their particular economic circumstances, these parents
must go to work to simply feed and clothe their children. As a result,
they sometimes resort to such extreme measures as locking their
disabled children in their rooms. Several people at the 1998 hearing
noted this unfortunate practice. According to the testimony of Lydia
Kadik-Gutierrez, these parents "are very attached to their children"
with disabilities, but "the children are warehoused, or kept in
rooms or closets, because (the parents) don't know what else to
do with them." In his testimony, Antonio Valdillez, a member of
the board of directors of the Golden Gate Regional Center, stressed
the need to ensure that minority parents have the option of sending
their children with disabilities to a "good and safe place." Otherwise,
he said, "there will still be parents that keep their sons and daughters
locked in their rooms.... To me, that's unbelievable. We are almost
in the year 2000, and there are still disabled people locked up
in their rooms wasting away." Mr. Valdillez held everyone at the
hearing accountable for this situation, including himself and the
members of NCD, "because you are letting this happen." When the
employment needs of minority individuals with disabilities and their
families have not been met, it is disabled children who have suffered
as a result. The fact that minority parents feel they must lock
their children with disabilities in a room because they cannot gain
access to affordable, integrated, and accessible childcare indicates
the desperation of their situation. It also underlines the urgent
need for action to address barriers to employment.
In addition to the employment barriers noted (the
lack of job training, the language barriers, and the lack of access
to childcare), minority individuals with disabilities and their
families must contend with the employment barriers faced by all
people with disabilities, regardless of race or ethnicity. The barriers
most frequently mentioned at the 1998 hearing were Social Security
work disincentives, lack of physical and architectural access to
places of employment, and failure to provide reasonable accommodations
in the workplace.
Recommendations
It is clear that people with disabilities from minority
communities still have tremendous difficulty gaining access not
only to appropriate training and career development opportunities,
but also to a host of additional employment resources that are often
available to the larger community. To address these barriers, NCD
recommends the following action:
- The Department of Labor, the Small Business Administration,
and the Department of Education should expand funding for culturally
appropriate job training and career development opportunities,
and should require all federally funded programs to demonstrate
their ability to meet the language, cultural, and disability needs
of all populations in their service area.
According to witnesses at the 1998 hearing, one of
the main barriers to finding appropriate job training and career
development opportunities is the failure of the vocational rehabilitation
system to address minority community needs. It is evident from testimony
and data reviewed that in spite of the Rehabilitation Cultural Diversity
Initiative started in 1992, significant racial disparities continue
to exist in the delivery of vocational rehabilitation services.
In California, these disparities are particularly apparent in the
areas of job training and placement services. To change these disparities
and improve service delivery for minority individuals with disabilities
in the state-federal vocational rehabilitation system, NCD recommends
that the following actions be taken:
- The Rehabilitation Services Administration should
address the racial disparities apparent in the vocational rehabilitation
system, particularly in the areas of job training and placement
services.
- RSA should expand long-term funding for culturally
appropriate job training and career development opportunities.
- RSA should strengthen and increase the number of
interventions outlined in Section 21 of the Rehabilitation Act,
which requires vocational rehabilitation agencies to take action
to better address the needs of underserved groups within their
service areas.
- RSA should conduct compliance reviews of all state
departments of rehabilitation to determine the extent to which
their efforts to comply with Section 21 of the Rehabilitation
Act have produced better outcomes for people with disabilities
from diverse cultural backgrounds in their states.
- The Small Business Administration, working with
the Presidential Task Force on Employment of Adults with Disabilities,
should provide more entrepreneurial opportunities for people with
disabilities from diverse cultural backgrounds to promote economic
independence.
- Federal, state, and local policy makers should
incorporate the unique needs of family members of individuals
with disabilities from diverse cultural backgrounds into the larger
disability policy agenda, particularly in the area of employment.
NCD applauds the efforts of the Department of Education
to fund and support the creation of culturally appropriate job training
and career development opportunities for minority individuals with
disabilities.
NCD encourages other governmental agencies to follow
the example set by the Department of Education, and promotes the
replication of model projects. Shiva Shultz, director of the Multicultural
Employment Program of the ARC of San Francisco, suggested that an
integral part of the program's success is interagency collaboration.
By working directly with the Golden Gate Regional Center and with
the Department of Rehabilitation, she said ARC was able to "better
match the cultural needs of individuals to their job placements,
and provide...higher quality person-centered services." NCD encourages
such inter-agency collaboration in order to improve job training
and career development opportunities for minority individuals with
disabilities.
Although interventions provided in Section 21(a) of
the Rehabilitation Act are substantial, efforts to deal with Section
21(b) have been less than adequate. "Preparing minorities for careers
in vocational rehabilitation, independent living, and related services"
is an obvious way to improve vocational rehabilitation services
for minority individuals with disabilities, but it should not be
the only intervention explored. As the California example illustrates,
the racial disparities apparent in the vocational rehabilitation
system are probably not going to be addressed without scrutiny.
Legislative requirements of compliance and accountability should
be incorporated into Section 21, in addition to several other interventions
in the areas of outreach, language, and communication.
The racial disparities documented in the California
vocational rehabilitation system are not unique to the state. They
have been found in several other state vocational rehabilitation
programs (Ross and Biggi, 1986; Walker, Saravanabhaven, Williams,
Brown, and West, 1996). Given the nationwide presence of these inequities,
and the failure of Section 21 to address them adequately, NCD recommends
that the U.S. Department of Education's Office for Civil Rights
conduct Title VI compliance reviews of the Vocational Rehabilitation
Services Program of every state department of rehabilitation. Each
department should be investigated to determine the level and quality
of vocational rehabilitation services being offered to minority
individuals with disabilities. If racial disparities are found,
states should be required to develop and implement a resolution
plan similar to California's Action Plan to Provide Racially Equitable
Vocational Rehabilitation Services. This resolution plan should
identify the main problems and issues in the state and outline specific
interventions designed to address those issues. If any state does
not implement its resolution plans, measures should be taken to
make the state accountable, including the possibility of suspension
or termination of Federal financial assistance.
Testimony presented at the 1998 NCD hearing indicated
that minority individuals with disabilities still lack economic
opportunity and, particularly, entrepreneurial opportunities. One
witness at the hearing suggested the solution that Congress allocate
funds to be loaned to minority individuals with disabilities who
are seeking to start their own businesses.
Several witnesses at the 1998 NCD hearing testified
they confronted discrimination when trying to obtain employment,
not only because of their disability but also because of their perceived
lack of language capacity. One witness felt that this "triple discrimination"
is the result of fear and ignorance, and suggested that "there be
more education available for employers." Several other respondents
echoed this suggestion.
Unless a certain level of English language capacity
is "an essential function of the job," minority individuals with
disabilities who speak English as a second language should not be
denied employment simply because of a heavy accent or a visible
physical disability. There is need for further investigation and
enforcement by the Equal Employment Opportunity Commission.
One of the major themes that emerged from the testimony
presented at the 1998 hearing was incorporating the issues of family
members of minority individuals with disabilities into the larger
disability policy agenda. One issue repeatedly mentioned at the
hearing was the lack of access to necessary childcare, particularly
after-school programs, for parents of minority children with disabilities,
with the result that a number of children with disabilities are
locked in their rooms at home because parents believe they have
no other options.
To address this situation, NCD recommends that the
following actions be taken:
- The Department of Justice should give a high priority
to investigations to assess compliance with Title III access mandates
among social service center establishments serving children.
- The Department of Education and the Department
of Justice should set a high priority on investigations of school
district compliance with IDEA least restrictive environment requirements
in the implementation of district-provided after-school programs.
- Congress should appropriate funding to increase
the supply of accessible, affordable, and integrated childcare
and after-school programs, and it should require that all federally
funded programs meet the language, cultural, and disability needs
of their entire service populations.
- The Department of Education should launch a nationwide
outreach campaign aimed at informing parents of minority children
with disabilities of the childcare and after-school program options
available to them. Parents need immediate and direct access to
information in bilingual and alternative formats on the availability
of accessible, affordable, and integrated childcare in their area.
b) Public accommodations
According to Section 302(a) of the Americans with
Disabilities Act, "No individual shall be discriminated against
on the basis of disability in the full and equal enjoyment of the
goods, services, facilities, privileges, advantages, or accommodations
of any place of public accommodation."13
In spite of this sweeping access mandate embedded in federal law,
access to public accommodations is nearly as elusive today as it
was when it was defined as a major problem for minority individuals
with disabilities at the 1992 NCD hearing in San Francisco.
Although Title III of ADA requires that places of
public accommodation remove architectural barriers in existing facilities
when it is "readily achievable" to do so, several participants at
the 1998 NCD hearing testified about the continued lack of architectural
access to places of public accommodation. In videotaped testimony,
Rudy Stefany, a student from American Samoa, noted:
There are major problems for accessibility to public
places..., especially for stores and buildings in the private
sector.... As for the government, I would say they are not really
into processing the required modifications even though some work
is being done.... However, there are still some people who still
do not understand that we are not disabled and that we are people,
human beings.
Judy Quan Gant agreed with Stefany's comments in both
written and oral testimony, and provided a personal illustration:
It's not enough for us to be in a wheelchair and
have a speech impairment problem, and then go to this place and
that place that is not accessible at all. We have a right to do
our own shopping; we have a right to eat in any restaurant once
in a while whe n we feel like it. Why is it so impossible? For
example, the market I used to go to put ice bins in front of their
meat and seafood cases, the full length of the aisle. At the far
end of the aisle was a pallet of beer. I used to be able to make
a left turn around the pallet and get out of the far end of the
aisle. But with the new ice bins, I couldn't get out, as the wood
on the pallet stuck out too far, and cut off my exit. I don't
understand why some humans discriminate against other humans.
We all are human beings, whether we are in a wheelchair or not,
or blind or not.... I don't feel that anyone who opens their door
for business should look down their nose at the poor or disabled
people.
Erica Li, a member of the San Francisco Chinese Blind
Support Group, testified that store owners in Chinatown routinely
"look down their noses" at people with disabilities by expanding
their stores out onto the sidewalk with no concern for the safety
and accessibility needs of people who are blind or visually impaired:
Stores are expanding their spaces, not only in
the front but also at two sides; one side along the curb where
the cars are parked, the other side in the front part of the store.
So the road becomes very narrow in the middle. They don't pay
attention to you. You won't be able to look or see. So it is very
hard for us to walk around and people can easily hit us. If you
touch their stuff, they will curse you and you will feel painful.
I hope the government will regulate those stores in Chinatown
so that we could move around Chinatown comfortably.
Ms. Li's concluding remark gets to the heart of the
problem: a prevalent lack of implementation, regulation, and enforcement
of the existing access mandates included in Title III of ADA. In
videotaped testimony, Lourdes Mugas-Talan, an independent living
specialist at the Hawaii Centers for Independent Living, also attributed
the continued presence of architectural barriers in Hawaii to this
lack of enforcement: "I always encounter architectural barriers
and I know that we have ADA..., but ADA is not really enforced tightly
or very well.... So, hopefully if the federal people are listening
to this, they should take extra steps in the enforcement of ADA."
Mariano Camacho, a member of the Governor's Developmental Disabilities
Planning Council in the Commonwealth of the Northern Marianas Islands,
provided an additional explanation for the persistence of architectural
barriers in places of public accommodation:
I had the opportunity to work with the Council
in implementing the requirements of ADA. We did a lot of changes
as far as architectural barriers are concerned. But as of this
date, I can say that we need more for accessibility.... As we
all know, the acce ssibility changes mainly concern expense. So,
I guess that is why the changes are very slow on the island. But
maybe if we get more assistance, people will be more willing to
do the changes.
Amy Marsh, president of the Environmental Health Network
of California, testified that the issue of access to public accommodations
for some people with disabilities "is more complex than common questions
of accessibility and the implementation of the Americans with Disabilities
Act." No matter how well ADA is implemented, regulated, and enforced,
for example, minority individuals with multiple chemical sensitivity
or environmental illness will still have difficulty getting into
public accommodations because the modifications required to accommodate
these particular disabilities often fall outside the scope of what
is considered "reasonable" under ADA. According to Section 302(b)(2)
of ADA, a public accommodation must make reasonable modifications
in its "policies, practices, or procedures" in order to accommodate
individuals with disabilities; but modifications are not required
if they would "fundamentally alter" the nature of the "goods, services,"
or operations of the public accommodation.14
In her testimony, Amy Marsh noted that people with multiple chemical
sensitivity or environmental illness often need reasonable modification
in the form of access to stores that carry "safe products." "But
I would be willing to bet," she said, "that these are not sold in
markets and stores in many of the lower-income neighborhoods here
in San Francisco. Minority and low-income people must be given the
choice of safe products in the places where they shop." In spite
of this unique need, the implementing regulations for Title III
specifically state that "a public accommodation is not required
to alter its inventory to carry accessible or special products...for...customers
with disabilities."15 In getting
access to public accommodations, minorities with underserved disabilities
(such as multiple chemical sensitivity and environmental illness),
for the most part, fall outside the scope of coverage outlined in
Title III of ADA.
Furthermore, noticeably absent from Title III is specific
reference to the language and communication needs of minority individuals
with disabilities and their families who speak English as a second
language, or who do not speak English at all. While the Individuals
with Disabilities Education Act has specific provisions guaranteeing
the right of families of disabled children to a language interpreter
and language-specific materials when needed, the only reference
in Title III approaching accommodation is in the regulations requiring
that public accommodations "provide auxiliary aids and services
when they are necessary to ensure effective communication with individuals
who have a hearing, vision, or speech impairment."16
Nowhere in the statute or regulations does it specifically state
that public accommodations must provide auxiliary aids and services
to ensure effective communication with family members of minority
individuals with disabilities who speak English as a second language.
Nor does the statute or regulations require public accommodations
to provide auxiliary aids and services to ensure effective communication
with minority individuals with disabilities who speak English as
a second language and do not have a hearing, vision, or speech impairment.
The use of "qualified interpreters" is considered an appropriate
"auxiliary aid and service" under ADA, and the implementing regulations
specifically state that "qualified interpreters" are "an example
of an auxiliary aid and service for individuals who are deaf or
hard of hearing." The regulations do not state that a qualified
interpreter is an auxiliary aid and service for minority individuals
with disabilities other than a hearing, vision, or speech impairment
(or their family members), who may not need a sign language interpreter,
but rather a Spanish, Chinese, or other language interpreter.
According to the testimony of Ming Quan Chang, a family
and child advocate at Cameron House (a nonprofit organization located
in Chinatown), the absence of any specific language in ADA that
speaks directly to this issue has had a profound impact on the ability
of one of her clients to get necessary medical care for a child
with a disability:
I have a client, and she is a single mother. She
has to take care of her nephew. She is one of the boat people
coming from Vietnam to here in 1990, and her nephew is a special
needs child.... She experienced getting very limited resources
for her nephew. She has a phobia to go to the hospital because
she said that she has to wait at least four hours to get a translator,
to get the services. Usually she has to wait at least four hours,
and sometimes she cannot get a translator at all. She waits six
hours or spends her whole day in the general hospital, and she
has to be rescheduled to come back the next few weeks. So right
now, she refuses to go back to the hospital to do the tests for
her nephew. ...And she's a Chinese-Vietnamese and she does not
read or write Chinese or Vietnamese at all, so it is right difficult
for her, even though she has a translator, to translate exactly
from what the doctor or nurse told her, so she has a difficulty
to understand because there's a cultural gap among Chinese, Vietnamese,
and American culture.
With ADA, if a minority individual with a disability
cannot learn English as a direct result of his or her disability
(such as a learning, developmental, or mental health disability),
a case could be argued that the person needs a language interpreter
and language-specific written materials to ensure "effective communication."
The law overlooks cases like the one mentioned above, however, where
a family member of a person with a disability (without a hearing,
vision, or speech impairment) speaks a language other than English
or ASL, and is in need of immediate access to a language interpreter
in order to provide necessary health and medical services for the
individual with a disability. As Hector E. Mendez, executive director
of La Familia in Hayward, noted in his testimony:
The Council bears a serious responsibility in advocating
and raising the issue that ethnic minority families, whose primary
language is other than English, need protection. IDEA has recognized
this and has included specific language to support the uniqueness
of such populations. The Council should address this issue head
on.
Thus, although minority individuals with disabilities
and their families face the same barriers as other people with disabilities
in getting access to public accommodations (such as the continued
presence of architectural barriers from a lack of regulation and
enforcement), they also have unique needs that are, for the most
part, outside the scope of coverage outlined in ADA. As Amy Marsh
noted in her testimony, these issues are obviously "more complex
than traditional questions of accessibility and the implementation
of the Americans with Disabilities Act." They are complicated by
a variety of serious gaps in the legal protections afforded minority
individuals with disabilities and their families in gaining access
to public accommodations.
Witnesses at the 1998 NCD hearing cited additional
difficulties, including a lack of architectural access to restaurants;
difficulty getting into accommodations necessary for professional
examinations; a limited number of accessible recreational facilities;
the failure of public accommodations to provide information in alternative
formats; requirements for receipt of services that are tied to the
use of medication for people with psychiatric disabilities; and
cultural difficulty getting into same-sex bathrooms for parents
of children with disabilities.
Recommendations
To address the persistent barriers that exist for
minority individuals with disabilities and their families in getting
into public accommodations, NCD makes the following recommendations.
- Congress should require federal enforcement agencies
such as DOJ, EEOC, DOT, and HUD to demonstrate their effectiveness
in serving people with disabilities from diverse cultural backgrounds.
- Federal enforcement agencies should work together
to develop a multi-agency outreach and technical assistance strategy
that would constitute a national campaign to increase knowledge
of civil rights protections and how to file complaints among protected
communities, focused on underserved groups such as language, racial,
and ethnic minorities, Native Americans, youth, and rural residents
with disabilities, and their families.
- Congress should ensure that civil rights enforcement
agencies have adequate financial and staffing resources to effectively
address the needs of their entire service areas.
- Congress and the Bureau of Indian Affairs should
provide federal financial support and assistance for the development
of tribal disability rights legislation.
Effective regulation and enforcement of the public
accommodation provisions of ADA is critical to addressing the unique
needs of people with disabilities from diverse cultural backgrounds.
In addition to minority individuals with underserved
disabilities and their families, another group largely excluded
from coverage under ADA is Native Americans with disabilities living
on tribal lands. As noted in a report produced by the Congressional
Research Service, "The Possible Applicability of the Americans with
Disabilities Act to Indian Tribes," for the most part ADA "specifically
excludes Indian tribes from its requirements."17
"Title I of ADA," the report states, "expressly excludes Indian
tribes from its definition of employer," but "none of the other
titles mentions Indian tribes."
This leads to a confusing and difficult situation
for Native Americans with disabilities, who are largely left with
no legal protection on the basis of disability, particularly in
the area of public accommodations. "While Title III appears to be
applicable to Indian tribes," says the report noted above, most
tribes "may be immune from suits to enforce Title III's provisions
by application of tribal sovereign immunity." Furthermore, only
one tribal government of the 143 surveyed for a study by the American
Indian Disability Legislation Project reported adopting ADA.18
Several other tribal governments in the survey said
that while they have discussed access and employment issues, they
do not have a written policy. Most tribes lack the financial resources
to mount a systemic effort to build tribal disability legislation.
State governments have little responsibility and even less authority
on reservations. While some foundations have interest in supporting
tribal development, they tend to focus narrowly on special issues
or support only a few tribes. Only the Federal Government has the
combination of authority, resources, and responsibility in this
area. Unfortunately, no federal agency has the duty to assist tribes
in addressing this gap in disability law and policy.
c) Transportation
Although minority group members with disabilities
have many problems with public transportation, the primary issue
emerging from the testimony was a perceived unwillingness on the
part of public transportation personnel to implement existing laws
and policies and to accommodate minority individuals with disabilities.
Chan Y. Yu, a member of the San Francisco Chinese Blind Support
Group, testified that this is a continuing problem for people from
minority communities who are blind or visually impaired:
When we get on the bus, if there are too many people,
even though there is a public notice on seating the disabled first,
people don't give up their seats, especially those young people.
The drivers don't say a thing. They should talk out and ask people
to give up their seats. Once, I came up and nobody said a word,
neither did the driver. I couldn't reach the handle bar. I almost
fell down when it started to move. If, indeed, I fell and got
hurt, who could have been responsible for it? So I hope the government
will keep on telling people...even though there have been some
public notices. The drivers should be told to tell people to help
those disabled. Everyone can tell those who are in the wheelchair
are disabled, but many people will kick the canes of the blind
till they are broken. So this is a problem. It has caused us a
lot of pain. We, the blind, only know it ourselves.
Erica Li, another member of the San Francisco Chinese
Blind Support Group, echoed this sentiment:
I couldn't agree more with Mr. Yu about the problems
in public transportation. I am a blind person myself. A lot of
times, when I get on a bus, the driver pushes me to the side instead
of looking around and trying to find me a seat or finding me a
safe pl ace to stand. At that time, I was thinking that I wouldn't
bother him if I could just find a seat or a safe place myself.
I sometimes wonder if the drivers knew about the law that they
were responsible for helping the blind to find a seat. Even if
there is none, they should guide them to a safe place to stand....
When I didn't know the road, I would ask the driver to remind
me to get off. Some will say yes or some only nod their heads
without making a sound. Some may take you back if you miss the
stop. Some can care less. Even sometimes, I asked him to stop
and he didn't respond, then he told me to find my own way. At
that time, I thought to myself that because I am a disabled person,
I would ask you for a little help. I never wanted to cause inconveniences
for you. However, if you don't have that kind of responsibility
and would not give me a hand, that seemed too meaningless. I hope
when drivers are being trained, they should be taught about the
basic knowledge that they should be officially helping us.
As Marcella Murphy pointed out in her testimony, these
issues "don't just affect the ethnic groups" that Mr. Yu and Ms.
Li "come from," nor do they just pertain to people who are blind
or visually impaired. According to Ms. Murphy, "people who have
all different kinds of disabilities" are affected by this unwillingness
on the part of public transportation personnel to implement existing
laws and provide necessary accommodations, including children with
disabilities who take public transportation to school. Gui Lan Lam,
a member of the Chinese Family Support Group and a parent of a child
with a disability, discussed her daughter's difficulties with public
transportation:
Because [my daughter] can't hold anything, it is
very difficult for her to take the bus. When she got on, if there
were a lot of people and there weren't any seats for her, then
she had to stand there and couldn't hold on to things. She couldn't
stand still and was bouncing around. Even if she got a seat, when
it was time to get off, she couldn't stand by the door before
the stop. Often she had to get off one or two stops later. My
Mimi can't walk like the others. So in that case, she had to walk
extra one or two stops. It makes it harder for her. I think the
government should provide care for these disabled children. Give
them taxi money to go see their doctors and get physical treatment.
It will be easier to attend the meetings.
Elisa Lau, another member of the Chinese Family Support
Group and a parent of a child with a disability, concurred with
this frustration in her testimony:
When [my daughter] goes to school, I wish some
drivers would help her to get on the bus, but sometimes they don't
even move. Being a parent, I would like to help her myself, but
my daughter is so big and I am very small. They don't want to
help and I can't blame them because I can't speak any English.
Although most people with disabilities experience
some level of difficulty getting access to public transportation
regardless of their racial or ethnic background, as Ms. Lau's testimony
points out, people with disabilities and their families from minority
communities experience even greater difficulty because of additional
language and communication barriers. These problems are often exacerbated
by the unwillingness of public transit officials to provide necessary
accommodations and implement existing laws. According to the results
of a study conducted in 1996 by the Howard University Research and
Training Center, there is reason to believe that bus drivers, in
particular, are "less accommodating and less courteous in minority
and lower-income communities than in middle-class and upper income
communities."19
Other barriers to public transportation for minority
individuals with disabilities and their families emerged in the
testimony presented at the 1998 NCD hearing in San Francisco. Individuals
who live in isolated areas and rural communities are confronted
with particularly daunting barriers. As Michael Collins, executive
director of the California State Independent Living Council, noted
in written and oral testimony:
The barriers to travel in this state vary from
the mountainous regions to hundreds of miles of desert highways
in the south and east. In Los Angeles County, public transportation
options that cross the entire county are limited. To require people
with dis abilities to travel great distances to a single location...is
asking a great deal, especially if those individuals do not have
their own reliable transportation available. ILCs [independent
living centers] and other groups are working at a number of levels
to help enhance the transportation network in this state, but
it is an effort that will probably never result in complete success.
In videotaped testimony, Phillip Ana, of the Hawaii
Centers for Independent Living, discussed the impact of limited
transportation options for people with disabilities living in the
Pacific Islands:
Hawaii needs a lot of things. Just about three
to four years ago, we just got our accessible bus system, but
that is only on Oahu, and transportation is not available on our
neighbor islands. We are talking about basic things like going
to medical appointments, going to dialysis, getting out.
As Mr. Ana pointed out, the lack of available and
accessible transportation has a direct impact on the ability of
minority individuals with disabilities to obtain other necessary
resources. Michael Collins also made this observation in his testimony:
You may also hear about problems with transportation,
and how those problems impact people who need to visit doctors,
go shopping, or simply visit their relatives and friends on an
impromptu basis.
Another factor brought out in testimony that directly
affects the ability of minority group members with disabilities
to get access to resources is the inordinate amount of time they
are forced to wait for transportation. In videotaped testimony,
Rudy Stefany, a student from American Samoa, commented that "transportation
is not a problem" for him, "except for the time that it takes to
get transportation." Liu Fu Hai's testimony was:
There is a problem with the transportation system.
It takes at least six hours to see a doctor using the public transportation.
Nothing we can do because we have to wait for the buses and change
to different buses. Then we are late for the appointment and have
to wait in a line.
Vernon Phillips, a freelance writer and musician who
is blind, provided the Council with a current example of this problem
in his testimony:
I was an hour and a half late today because I,
obviously, was in a place where a cab wouldn't pick me up until
I finally went blocks and blocks to an area where I guess they
pick up people if they call, and I got here. This may not be real
for anyone else, but it's very real for me.
Recommendations
Many factors contribute to the inability of minority
group members with disabilities to gain access to transportation,
including an unwillingness on the part of public transportation
personnel to provide necessary accommodations and implement existing
laws; language and communication barriers; limited transportation
options for people living in isolated areas and rural communities;
and prolonged waiting time for transportation, both public and paratransit.
To address transportation barriers, NCD makes the following recommendations.
- DOT and/or DOJ should investigate the extent to
which local compliance with ADA transportation requirements is
influenced by race, ethnicity, and culture.
- Congress should ensure that transportation civil
rights enforcement agencies have adequate financial and staffing
resources to maintain an adequate presence with covered transportation
entities to ensure compliance.
- DOT should make funds available for local transportation
providers to furnish on- going diversity and disability awareness
training for all public transportation personnel, as well as specific
training on the public transportation provisions of ADA.
- DOT should create incentives for local transportation
providers to increase efforts to hire bilingual public transportation
personnel in service areas with high concentrations of non-English
speakers.
Effective regulation and enforcement of the transportation
provisions of ADA is critical to addressing the unique needs of
people with disabilities from diverse cultural backgrounds. Testimony
presented at the 1998 NCD hearing suggests a major need to provide
ongoing diversity and disability awareness training for all public
transportation personnel. Additional training is needed to ensure
that public transportation personnel are aware of the access mandates
embedded in federal law for people with disabilities, as well as
the accountability measures that will be undertaken in the event
of noncompliance. They need to know that there are consequences
for failing to honor federal access requirements, as well as rewards
for success.
C. BARRIERS TO CULTURALLY COMPETENT
SERVICE DELIVERY 1. Overview
This chapter discusses persistent barriers to culturally
competent delivery of disability- related services. Although Congress
recognized the need for greater minority representation in rehabilitation
occupations in 1992, efforts so far have been inadequate to address
this problem. Similarly, the need for multilingual and multicultural
communications with clients from minority communities has been recognized,
but consistent problems remain.
NCD recommends that the Office of Special Education
and Rehabilitative Services of the U.S. Department of Education
increase its efforts to ensure that education and training at the
local level is culturally accessible.
2. Analysis
The 1994 amendments to the Developmental Disabilities
Assistance and Bill of Rights Act define "culturally competent"
service delivery as "services, supports, or other assistance that
are conducted or provided in a manner that is responsive to the
beliefs, interpersonal styles, attitudes, language, and behaviors
of individuals who are receiving services, and in a manner that
has the greatest likelihood of ensuring their maximum participation
in the program."20 Since the 1992
NCD hearing in San Francisco, only very limited headway has been
made in removing the barriers to culturally competent service delivery
for minority individuals with disabilities and their families. According
to witnesses at the 1998 hearing, substantial progress has been
blocked by the recent political developments in the state. In her
testimony, Eva Casas-Sarmiento, statewide outreach coordinator for
Protection & Advocacy, Inc., highlighted some of these major developments,
and emphasized their importance to people with disabilities from
diverse cultural populations throughout the United States:
Today I invite the members of the Council to pay
special attention to California because we are the second largest
state and the state with one of the most diverse populations.
Because of our diversity, California laws and policies set the
stage for nationwide trends and changes, especially in the area
of public assistance and services to immigrants.... There are
many recent major developments in California which are having
a disparate impact on minorities in general, but also on minorities
with disabilities in particular....What is happening in California
which affects people with disabilities, and in particular minorities
with disabilities?...The move toward managed care, welfare reform,
the zero tolerance law, the three strikes criminal law, Proposition
187, Proposition 209, and Proposition 227.
Less than two years after the 1992 NCD hearing in
San Francisco, California voters approved Proposition 187, a statewide
initiative that prohibited "state and local government agencies
from providing publicly funded education, health care, welfare benefits,
and social services to any person that they did not verify as either
a U.S. citizen or a person legally admitted to the U.S."21
Coupled with the federal welfare reform law of 1996 and the failure
of the Immigration and Naturalization Service to comply with federal
law mandating reasonable accommodations, this initiative has proven
to be particularly detrimental for undocumented immigrants with
disabilities. According to Eva Casas-Sarmiento, the passage of Proposition
187 led to a sense of fear among many immigrants with disabilities
and had a "chilling effect" on service utilization by this particular
population:
Part of Proposition 187 requires that public agencies
report any person suspected of being undocumented. This has had
a chilling effect and instilled fear in minority immigrants with
disabilities who then do not seek services and preventive care
which is desperately needed and for which they are eligible.
Manuel Vasquez, director of Mission Mental Health
Services in San Francisco, discussed the implications of this "chilling
effect" for minority individuals with mental health disabilities
in his testimony:
One of the major implications that we have experienced,
in terms of services to the disabled Latino, is...the implication
of the recent passing of Proposition 187, as well as 209....We
feel that it has major implications for the population that we
specifically serve in the Mission.... Because of residency requirements,
not only does our population suffer from major mental illness
that promotes disability, but also discriminatory policies by
the state and federal government that excludes people from the
help that they need....They exclude immigrant populations," particularly
those populations that may be here without legal papers, from
earlier access to the health care system, therefore delaying the
response for earlier treatment.
Less than two years after the passage of Proposition
187, the California Civil Rights Initiative was approved by 54.6
percent of the California electorate. Also known as Proposition
209, this measure eliminated "state and local government affirmative
action programs in the areas of public employment, public education,
and public contracting to the extent these programs involved "preferential
treatment" based on race, sex, color, ethnicity, or national origin."22
According to witnesses at the 1998 NCD hearing, this
ban on affirmative action programs in the state has had a direct
impact on the outreach to, and representation of, minority individuals
with disabilities in disability service professions.
Eva Casas-Sarmiento spoke to this impact: "Affirmative
action policies helped providers of services for people with disabilities
recruit not only trained and experienced people, but also persons
who were culturally competent in language ability and life experience."
With the passage of Proposition 209, however, it became illegal
for providers of services to people with disabilities to conduct
targeted recruitment, outreach, and hiring of women and minorities.
The result was that the strategy developed by NCD in 1993 to remove
barriers to culturally competent service delivery by increasing
minority representation in disability service professions, and improving
culturally appropriate outreach, was rendered ineffective in California.
Another prong of NCD's earlier strategy, addressing
the language and communication needs of minority individuals with
disabilities and their families, also proved to be largely ineffective
in California as a result of the controversy in the state over the
issue of bilingual education. Title VI of the Civil Rights Act of
1964 guarantees the right of limited English proficient (LEP) children
to an equal education. In 1974, this right was upheld by the Supreme
Court in Lau v. Nichols, in part as a result of the tremendous
activism of the San Francisco Chinese community. The Court ruled
that children who were limited in their ability to speak, read,
and write English were deprived of equal treatment when the schools
failed to meet their linguistic needs.23
A little more than 20 years after this ruling, the
controversial "English for the Children" initiative was developed
in California, which was overwhelmingly approved in the June 1998
primary election by a 61 to 39 percent margin. This initiative,
better known as Proposition 227, virtually eliminated bilingual
education in California for the state's 1.4 million limited-English-speaking
children, who represent more than half of the national total. Specifically,
it established a statewide system of English-immersion instruction
for limited English-speaking students that is mandated to last no
more than one year. After the one year limit expires, children with
limited English-speaking skills are required to participate in mainstream
classes.24 According to witnesses
at the 1998 NCD hearing, this policy has serious implications not
only in terms of the overrepresentation in special education of
children from diverse cultural populations, but also in terms of
the public's willingness to accommodate minority individuals with
disabilities and their families who are limited- or non-English
speaking.
In his testimony, Hector E. Mendez, executive director
of La Familia in Hayward, noted:
These perverse laws and initiatives have eliminated
any possibility of inclusion to improve the quality of our lives.
The effects of such policies are creating a sense of terror among
many Latinos and very much among families with children and adults
with disabilities.
Eva Casas-Sarmiento further noted in her testimony
that all of these policies have had a "disparate impact on the lives
of minorities in general," but they have also had a particularly
"negative impact on the lives of people with disabilities who are
from traditionally underserved communities and are in need of culturally
competent services." For this reason, she warned NCD "to pay special
attention to the situation in California" because "California laws
and policies set the stage for nationwide trends and changes." According
to California state librarian Kevin Starr, "California is the prism
through which the United States is glimpsing its future."25
If this is the case, recent political developments in California
have ramifications in terms of service delivery for minority individuals
with disabilities throughout the United States. An example is a
measure passed the U.S. House of Representatives on September 10,
1998, that placed strict limits on bilingual education in the entire
United States. This can be interpreted as a direct result of California's
Proposition 227 and a clear indication that California is truly
"the prism through which the United States is glimpsing its future."
Fifty-two percent of the participants at the hearing
testified about their difficulties in getting culturally competent
services resulting from the lack of minority representation in disability
service professions. More than 42 percent testified about the inadequacy
of culturally appropriate outreach efforts. Another 40 percent discussed
the failure of disability service providers to address the language
and communication needs of minority group members with disabilities
and their families. These testimonies illustrate the strength of
the barriers that continue in culturally competent service delivery,
particularly in the areas of representation, outreach, and language.
a) Minority Representation in Disability Service Professions
Among the primary barriers to culturally competent
service delivery identified at the 1992 NCD hearing was the lack
of minority representation among disability service personnel. To
address this situation, NCD called for an increase in the number
of minority individuals working in disability service professions.
Responding to this issue in 1992, Congress added Section 21, "Traditionally
Underserved Populations," to the Rehabilitation Act of 1973. Through
Section 21, Congress hoped to improve the delivery of culturally
competent services to minority individuals with disabilities in
the state-federal vocational rehabilitation program by mandating
the creation of interventions that would increase the number of
minority professionals working in vocational rehabilitation, independent
living, and related services. Despite this mandate from Congress,
minority group members with disabilities and their families still
face barriers to culturally competent service delivery because of
the shortage of disability service professionals from diverse racial
and ethnic communities. In testimony at the 1998 NCD hearing, Nicole
Brown-Booker commented on this lack of minority representation in
the field of disability counseling services:
I work in an agency that provides counseling services
for...parents with disabilities, and one thing that really stands
out for me is that none of the clinicians...and only one of the
therapists on staff is a person of color.... I've just finished
my graduate work, and I'm going to be a therapist...but I haven't
been able to find other people who do the work that I do, that
work with clients that have disabilities that are people of color....
I feel like I'm the only person out there who looks the way I
look, and is working with...this particular population.
Rudy Stefany, a student from American Samoa, offered
a client's perspective in videotaped testimony. He noted the tremendous
need for "more counselors and people that really understand what
people with disabilities are going through." An unidentified Asian
woman agreed with this sentiment in her testimony. "There's a shortage
of culturally appropriate counseling," she said, "and I'm in dire
need of counseling that's bicultural.... I'm stressed out because
I don't really want to bare my soul to someone who doesn't understand
both sides of where I came from." Phillip Ana, of the Hawaii Centers
for Independent Living, understood this need for cultural identification
between clients and disability service providers, particularly in
the mentoring process:
When we talk about vocational rehabilitation, what
would be helpful is to have someone who is a minority. I think
the biggest thing that helped me was to have a model to look at--someone
to identify with and say, "He did it or she did it, and so can
I." I had individuals to look up to and it made a difference....
When working with someone in Samoa, you need to speak the language
and show people of the same culture who have had success. ...Find
someone who lives in my community, I know his family. If he can
make it, I can make it.... It's hard to teach someone from a minority
culture about advocacy unless you do it in terms that are understandable.
In an 1991 article, "Goals for Improving Services
to Minority Individuals with Disabilities," Robert R. Davila, former
Assistant Secretary for Special Education and Rehabilitative Services
of the U.S. Department of Education, also noted the importance of
cultural identification in mentoring minority children with disabilities:
Minority students are directly and positively affected
by the presence of minority teachers in the classroom. Children
with disabilities from minority backgrounds need role models every
bit as much as other children. I know this from personal experience.
During the entire time I was a student, from elementary school
through graduate school, I was never taught by a teacher from
a minority background. Indeed, there was a time in my life when
I actually believed that an individual with a minority background
could not be a teacher.26
Today, minority children with disabilities in California
might come to a similar conclusion given the racial and ethnic composition
of special education teachers in the state. Eva Casas-Sarmiento
testified that a "number one concern" for "minorities with disabilities"
is the "lack of special education teachers, counselors, aides, therapists,
and other providers who speak their language and understand their
particular needs unique to their life experience, culture, or race."
Nancy Lim-Yee, a health worker at the Chinatown Child Development
Center in San Francisco, also expressed concern that "there are
few bilingual/bicultural school personnel in all areas of special
education, including teachers, paraprofessionals, school psychologists,
speech and language specialists, physical/occupational therapists,
etcetera." Statewide special education data validate this concern.
According to the Special Education Statewide Enrollment
Reports from April 1998, more than half (57%) of the students enrolled
in special education in California are from minority communities.
Even so, fewer than 15 percent (14.9%) of the special education
teachers in the state are minority, and almost 85 percent (84.3%)
are White.
Nancy Lim-Yee testified that this racial and ethnic
imbalance among special education teachers and students with disabilities
in California leads to "conflicting expectations and poor parent-teacher
communication":
Parents are not able to communicate on a regular
basis with their children's teachers in order to work together
for the benefit of the children. Thus parents do not get the information
they need, and teachers are frustrated with the lack of follow-through
and support. The child often ends up blamed, shamed, and isolated.
These communication problems are often compounded
when parents of children with disabilities live in isolated areas
and rural communities. Because of the transportation barriers in
rural communities and the lack of available language interpreters,
these parents have extreme difficulties communicating with the special
education teachers in their area, who are usually White and monolingual.
To address this specific concern, California State
University at Chico launched an aggressive teacher training program
in 1994 designed to prepare bilingual university students from traditionally
underrepresented ethnic groups, and students with disabilities,
for careers teaching special education in rural California school
districts. This project, called "Meeting Changing Rural Needs,"
placed an emphasis on meeting the unique needs of culturally and
linguistically diverse special education students. Through a grant
from the U.S. Department of Education's Office of Special Education
and Rehabilitative Services, the program in four years has offered
substantial financial assistance to 29 students from minority communities,
15 of whom are now employed as teachers in California public schools.
Because of programs such as this, California is beginning to see
an increase in the number of bilingual/bicultural special education
teachers, but the numbers still fall well below the need. Nancy
Lim-Yee contends that the most effective way of meeting this need
is to "mandate recruitment and hiring of bilingual and bicultural
staff at all levels."
One level of the special education system in California
that could benefit from targeted recruitment and hiring is mediation
and due process. In her testimony, Beverlyn Lee, a special education
advocate and a parent of a young man with a disability, pointed
out the lack of minority representation among special education
mediators and hearing officers:
I would like to share with you one example of institutionalized
racism perpetuated by our special education service delivery system.
As a special education advocate I have represented many families
of color in mediation and statewide administrative hearings. There
are no mediators or Special Education hearing officers of color,
particularly African Americans. As we approach the new millennium,
we seem to be no further away from the "Jim Crow" laws that limited
our personal freedom. There is no justification for the lack of
diversity at this level. The not so subliminal message is that
Anglo Americans still make all the decisions with respect to our
lives.
Ms. Lee's testimony was a shock to most of the participants
at the hearing. After she presented her testimony, one NCD member
asked, "Am I understanding you to say that at the state mediation
level within special education, in a state such as California, there
are no mediators...of any color?" "Not that I know of," Ms. Lee
responded. "Not at the mediation hearings that I have represented
parents at. There's no one of color, and particularly no African
Americans."
NCD discovered that Ms. Lee's findings are accurate.
According to Glenn Fait, the director of the California Special
Education Hearing Office at McGeorge School of Law, there are no
special education mediators of color in the state, and only three
of the eight hearing officers are persons from minority communities.
Furthermore, as Ms. Lee contended, no special education mediators
or hearing officers in California are African American.
When questioned about the outreach and recruitment
efforts conducted by the California Special Education Hearing Office,
an official of the Institute for Administrative Justice at McGeorge
School of Law reported that announcements are routinely made at
the Special Education Advisory Committee when there are vacancies
for mediator positions. This committee is composed of representatives
from several disability organizations, including Protection & Advocacy,
Inc., and the Disability Rights Education and Defense Fund. Because
special education hearing officers are required to have a Juris
Doctorate degree, recruitment for these positions is limited to
advertisements in legal newspapers and announcements on the Internet.
The California Special Education Hearing Office does not conduct
targeted recruitment of specific racial and ethnic groups, nor are
any specific efforts made to hire people with disabilities. Of the
15 mediators and 8 hearing officers, only one mediator is a person
with a disability, and that person is not a member of a racial or
ethnic minority group.
This raises another issue of representation that is
largely overlooked in the discussion about culturally competent
service delivery: the lack of disability service personnel who are
not only members of racial and ethnic minority groups, but also
people with disabilities. That someone is bilingual or bicultural
does not necessarily mean the person will understand or be sensitive
to the needs of people with disabilities from minority communities.
This is a particular problem given the stigmas attached to disability
within various cultures. A member of the Chinese Family Support
Group made this point in her testimony:
We have applied for SSI...at the branch office
of SSI in Chinatown. This woman cursed us. She has cursed 99 percent
of the Chinese who went there. She does things differently according
to the situation. ... She has the worst attitude. ... I hope these
things could be noticed, and pay attention to the social worker's
attitudes. We don't like to have disabled people at home, but
we don't have any choices.
In his testimony, Li Yu Lan of the Chinese Newcomer
Support Center noted that generational differences and immigration
status further complicate this issue:
I have come across some problems when dealing with
the Social Security bureau. There is a group of Chinese who work
at the bureau at Kearny Street in Chinatown of San Francisco....
The people that work there asked me how many years I have worked
in mainland of China. I said almost 38 years. They thought I must
have retirement. I said I didn't have that. They asked me to get
a certificate from them. I said you people in America have no
idea about how it works in China. They are hoping you would have
died. They won't write anything for you. I said it is impossible
to obtain one. They insisted if I don't provide a certificate,
they won't be able to help me. I was trying to explain to them
the situation.... A few months later, the dismissal certificates
of my wife and children were here, but I still didn't receive
mine. So I wrote a letter to the mainland. After another few months,
they finally sent me one. I submitted it to the Social Security
bureau, but they wouldn't believe me.... I think the bureau was
intended to be set up in Chinatown so that it could provide help
for the Chinese. On the contrary, we experienced problems....
They should be more careful about who they choose and find people
who are ready to serve.
Thus, generational differences among immigrant groups
can further complicate service delivery. Even if disability service
providers are bilingual, bicultural, and disabled, they still may
not understand the unique needs of recent immigrants with disabilities
if they are third- or fourth-generation Americans.
Another aspect of representation noted at the 1998
NCD hearing is the absence of minority individuals with disabilities
in positions of decision-making power. Beverlyn Lee concluded her
testimony by asking, "When will African Americans be able to finally
sit at the decision-making table? We are ready and tired, so tired
of waiting." Nowhere is this discrepancy more apparent than in the
composition of the general and administrative staff for California's
network of independent living centers. In his testimony, Michael
Collins, executive director of the California State Independent
Living Council, discussed some of the efforts being undertaken by
the state's independent living centers to meet the unique needs
of minority individuals with disabilities and increase their representation
within the general ILC staff population:
I am proud to point out that many of the independent
living centers in California have taken positive steps in dealing
with the unique needs of minority communities. Outreach offices
in San Francisco, Orange County, and many other counties provide
materials and services in multiple languages to meet the needs
of the populations who reside there. Several offices, including
Salinas, El Centro, and Indio, provide bilingual staff members
who speak Spanish to meet the needs of a booming immigrant population.
The positive results of these efforts are reflected
in the racial and ethnic composition of the ILC general staff members.
According to the Section 704 Report for 1997, more than 50 percent
(52.34%) of the general staff for the state's independent living
centers are members of minority communities, and at least 60 percent
(60.2%) are people with disabilities.27
Elsa Quezada, executive director for the Central Coast
Center for Independent Living, noted, however, that this same level
of diversity is not reflected at the administrative level among
decision-making staff. She said only a handful of ILC executive
directors in the state are members of minority communities. The
Section 704 Report, in fact, reveals that more than 60 percent (62%)
of ILC decision-making staff are White.28
This lack of racial and ethnic diversity is also reflected
in the composition of the California State Independent Living Council.
Michael Collins pointed out that of the 18 current SILC members
only one representative is a person from a minority community. Section
705(b)(4) of the Rehabilitation Act of 1973 requires that a majority
of all SILC members be persons with disabilities. There is no similar
requirement in the law to ensure minority representation.
Testimony presented at the 1998 NCD hearing indicated
that minority group members with disabilities and their families
experience great difficulty getting access to necessary resources
in the areas of counseling and special education because of the
shortage of bilingual and bicultural service providers. Some witnesses
at the hearing noted that these difficulties are compounded when
service providers do not have a disability or when they are three
or four generations removed from immigration. Although minority
representation within California's independent living centers has
increased significantly over the past six years, there are still
noticeable differences between the numbers of minority individuals
represented at the general and administrative staff levels.
When officials were questioned about the continued
shortage of minorities within disability service professions, the
common explanation was that minority individuals with disabilities
do not apply for these positions. This response absolves agency
representatives of responsibility and implies that minority individuals
with disabilities are not applying because they are not interested.
The testimonies presented at the 1998 NCD hearing in San Francisco,
however, indicate that the reasons for the lack of minority representation
are more complicated than a simple lack of interest. Participants
at the hearing felt that it had more to do with cultural barriers
in society, particularly those related to culturally appropriate
outreach.
Recommendations
Based on the testimony presented at the 1998 NCD hearing,
it is clear that minority individuals with disabilities still encounter
significant barriers to culturally competent service delivery as
a result of a shortage of disability service personnel from diverse
cultural backgrounds. To address this barrier, NCD makes the following
recommendations.
- The Departments of Education, Health and Human
Services, and Labor should increase incentives for recruitment
and education of individuals from diverse minority and cultural
communities, particularly individuals with disabilities, to enter
disability service professions, and to be afforded educational
and professional development opportunities after entry. For example,
the Department of Education should enhance funding for scholarships
funded through the Office of Special Education and Rehabilitative
Services to minority institutions to increase the number of qualified
graduates of culturally diverse backgrounds, especially those
with disabilities.
- RSA and the Office of Special Education and Rehabilitative
Services (OSEP) should continue efforts to increase the number
of minority professionals working in vocational rehabilitation,
independent living, and related services, and they should encourage
duplication of these efforts by other disability service agencies.
Rehabilitation Capacity Building initiatives should be used to
develop new programs in Historically Black Colleges and Universities,
Hispanic Serving Institutions, Native American serving institutions,
and Asian American/Pacific Islanders serving institutions that
will increase the number of qualified rehabilitation personnel
of diverse cultures in the system.
- RSA and other federal funders should require disability
service providers to have a demonstrated commitment to workplace
diversity and family-friendly policies. Along these lines, RSA
should mandate hiring of a higher percentage of graduates (RSA
scholarship recipients) of the programs mentioned above each year
to fulfill the Comprehensive System of Personnel Development needs
of every agency.
- Congress should appropriate adequate funding to
EEOC, DOJ, HUD, DOT, and DOED to enable them to provide disability
rights training to people with disabilities from diverse cultural
backgrounds, their family members, and bilingual individuals,
with the goal of creating a core group of culturally diverse individuals
in every state who can train additional individuals in the requirements
of federal civil rights laws and how to use those laws when a
violation occurs.
- The Department of Education should issue a policy
memorandum mandating targeted recruitment and hiring of bilingual
and bicultural special education staff, including staff with disabilities,
at all levels.
- OSEP, along with the Office for Civil Rights at
the Department of Education, should investigate the racial and
ethnic composition of special education staff, including mediation
and due process outcomes.
- Federal funding agencies such as Education, HHS,
and DOL should encourage voluntary public disclosure of diversity
data for entities receiving federal funds. In addition, federal
agencies such as RSA should require an annual cultural competency
assessment for every state agency and maintain a national database
containing the following personnel information: position, ethnicity,
gender, disability status, education, certification/licenser,
and salary.
- NIDRR should fund a longitudinal study on participation
of culturally diverse professionals in the rehabilitation system.
In addition, NIDRR should fund research on rehabilitation outcomes,
educational outcomes, and so forth, as a function of counselor/teacher
ethnicity, gender, disability, education, and professional competency.
In 1992, Congress added a new Section 21 to the Rehabilitation
Act of 1973 entitled "Traditionally Underserved Populations." Through
Section 21, Congress hoped to improve the delivery of culturally
competent services to minority individuals with disabilities in
the state-federal vocational rehabilitation program by mandating
the creation of interventions that would increase the number of
minority professionals working in vocational rehabilitation, independent
living, and related services.
The Rehabilitation Services Administration responded
to this congressional mandate by implementing a series of interventions
designed to meet this goal. One of these interventions was financially
assisting institutions of higher education with at least 50 percent
minority enrollment to prepare students for vocational rehabilitation
and related service careers. Another was launching the Capacity
Building Project in 1996 with the awarding of 17 grants to various
educational institutions and nonprofit service agencies for the
provision of outreach services to minority entities.
NCD applauds the efforts of the Rehabilitation Services
Administration to increase the number of minority professionals
working in vocational rehabilitation, independent living, and related
services. NCD supports the continuation of these efforts and encourages
other federal agencies to follow the example set by RSA.
NCD also recognizes the efforts of the Office of Special
Education and Rehabilitative Services to increase the number of
minority professionals working in the field of special education
through the provision of educational and professional development
opportunities in the form of long-term training grants. One OSERS
project of particular note is the "Meeting Changing Rural Needs"
administered by California State University at Chico's Special Education
Department, described earlier. In order to address the racial imbalance
that exists in California between special education students and
staff, several witnesses at the hearing suggested that targeted
recruitment and hiring of bilingual and bicultural special education
staff should be mandated at all levels. Partnerships need to be
established with minority community networks in order to develop
a national outreach program targeting minority populations that
will increase their employment numbers in the field of special education.
Two of the primary mechanisms for regulation and enforcement
in special education are mediation conferences and due process hearings.
In California, given the current racial and ethnic makeup of the
special education mediators and hearing officers in the state, there
is strong reason to believe that these methods of regulation and
enforcement are not as effective for parents of minority children
with disabilities (100 percent of the mediators and 62 percent of
the hearing officers in the state are White). If this is the case
in California, one of the most ethnically diverse states in the
nation, then there is reason to believe that lack of minority representation
and corresponding ineffectiveness of regulation and enforcement
also exist in several other states across the nation.
NCD recommends that all federal and state disability
service agencies, particularly state special education hearing offices,
increase their voluntary disclosure of information related to the
racial and ethnic composition of their workforces, particularly
at the administrative level. Public disclosure of how well disability
service agencies are expanding employment opportunities for minority
group members can be an effective incentive for other disability
service agencies to develop similar measures and begin a process
of positive social change. The availability of this information
will also assist professionals from minority backgrounds in making
informed employment choices.29
Several of the witnesses at the 1998 NCD hearing in
San Francisco recommended that specific efforts be made to increase
the number of minority individuals with disabilities in positions
of decision-making power, particularly within disability service
agencies such as California's network of independent living centers.
All disability service agencies, particularly centers
for independent living, should be required to examine their practices
and procedures for promoting qualified minorities with disabilities
to administrative and decision-making positions, assuming that such
procedures exist. Short- and long-term objectives should be developed
that aim to increase the representation of minority individuals
with disabilities at the administrative level. Internal mechanisms
to assess agency progress in meeting stated diversity objectives
should also be implemented.30
Preparing minority individuals with disabilities for
administrative and decision-making positions should begin early
on in life. Minority youth with disabilities must have direct access
and exposure to successful minority adults with disabilities occupying
positions of decision-making power. Several programs across the
United States are currently promoting this objective, including
the Bridges to Youth Leadership 2000 Minority Students with Disabilities
Mentorship Program, sponsored by the Howard University Research
and Training Center for Access to Rehabilitation and Economic Opportunity;
the California Youth Leadership Forum for High School Students with
Disabilities, sponsored by the California Governor's Committee for
Employment of the Disabled; and the annual National Leadership Development
Conference for Youth with Disabilities, sponsored by the National
Council on Disability, the Department of Health and Human Services
(Administration on Developmental Disabilities, Maternal and Child
Health Bureau, and Substance Abuse and Mental Health Services Administration),
the Social Security Administration, and the Department of Education.
The Rehabilitation Services Administration made substantial
efforts to improve outreach to minority communities by launching
the Capacity Building Project in 1996. The goal of this Project
was to provide technical assistance and outreach to "minority entities"
(minority educational institutions, minority-owned businesses, and
organizations serving minority individuals with disabilities) in
order to build the capacity of these entities to compete successfully
for and manage RSA and NIDRR-funded grants, contracts, and cooperative
agreements.31
Despite these efforts, minority group members with
disabilities and their families are still largely unaware of the
services and resources available to them. A recent study conducted
by the Howard University Research and Training Center found that
"persons with disabilities, especially those who are from diverse
ethnic minority communities, are not sufficiently aware of the existing
laws pertaining to services and opportunities for employment available
to them."32 This finding is corroborated
by the testimonies presented at the 1998 NCD hearing in San Francisco.
Eva Casas-Sarmiento, statewide outreach coordinator for Protection
& Advocacy, Inc., testified that "in many instances, noncitizens
with disabilities assumed that they could not become citizens because
they did not know of laws which exist to help them become citizens,
such as the waiver of the naturalization testing and oath requirements
and reasonable accommodations as required by ADA." In videotaped
testimony, Rudy Stefany, a student from American Samoa, noted that
"getting information is a problem." "As for the Americans with Disabilities
Act," he said, "there are still people who are unaware of the Act....These
agencies really need to go out there and inform them of what is
really going on right now." Lourdes Mugas-Talan of the Hawaii Centers
for Independent Living also observed that "a lot of people" she
works with "are still not aware of ADA." Another employee of the
Hawaii Centers for Independent Living, Phillip Ana, provided the
following:
I live on the Windward side of Oahu and the population
there includes Tongans [and] Samoans. This population, depending
on where they come from, is not aware of the issues for people
with disabilities, such as accessibility and employment for their
sons and daughters.
As Mr. Ana's remarks indicate, parents of minority
children with disabilities have a particularly difficult time getting
the information they need, especially if their native language is
not English. According to the written testimony of Nancy Lim-Yee,
a health worker at the Chinatown Child Development Center in San
Francisco:
For...parents who are limited- or non-English-speaking,
the greatest problem is that of minimal or nonexistent access
to information and resources.... Because of language and cultural
barriers, parents have a more difficult time learning about and
being able to exercise their rights and responsibilities. Most
parents are not aware of the services available to their children
through the schools, such as augmented facilitative speech services,
full inclusion, adaptive technological assistance, etcetera....
They are also not aware of the resources available to them.
Noreen Ringlein, an advocate for Parents Helping Parents,
a parent training and information center in San Francisco, concurred
with that testimony and noted that her job is becoming increasingly
difficult because "the system isn't informing parents that laws
exist." Both state and federal law require that school districts
provide all parents of children with disabilities with a "notice
of parent rights," which must be translated into a parent's native
language, if requested. This notice explains the procedural safeguards
and rights afforded to special education students and their parents
under the Individuals with Disabilities Education Act and the California
Education Code (20USC1415; 34CFR300345; Educational Code 56321).
Among these rights is the right to have an interpreter present at
an IEP meeting, as well as the right to have all pertinent materials
translated into a parent's native language. In spite of these legal
rights and notification requirements, Ruben Rangel, a parent of
a child with a disability, testified that "up until this year, I
was not aware that I had the right to an interpreter, that I had
a right to ask the program specialists to present...materials in
my native language. I didn't know about this. I always went to the
IEP alone....I didn't know that we had these rights."
Witnesses at the 1998 NCD hearing said that increasing
awareness among minority individuals with disabilities would require
that all outreach efforts be made in a culturally and linguistically
appropriate manner, taking account of the fundamental differences
between majority and minority cultures. Beverlyn Lee made this point
when she asked, "When will the system learn that one must gain knowledge
about others' cultures to effectively reach them? It is not enough
to just tolerate us. You must know us.... If we intend to include
people of color we must be sensitive to their cultural values, practices,
and the context in which these practices take place." Nancy Lim-Yee
noted in her testimony that effective outreach requires a recognition
and understanding that "cultural differences are very real," and
that these differences directly affect the ability of minority group
members with disabilities and their families to get the information
and services they need.
In a 1997 article, Virginia Thompson chronicled some
of the fundamental differences between majority and minority cultures
and discussed the implications of these differences for outreach
and service delivery for minority individuals with disabilities.
According to Thompson, "the U.S. majority culture, considered by
some the most individualistic in the world, lies at one extreme
of a worldwide individualistic-collectivistic continuum, while most
U.S. minority groups have contrastingly collectivistic orientations,
reflective of their respective cultural origins."33
Thompson contends that underlying these different cultural orientations
are divergent views of self, based either on independence or interdependence.
The independent view of self, most often expressed in individualistic
cultures, is grounded in a belief of the primacy of the individual
where personal autonomy is valued and family and community are of
secondary consequence, she says. Interdependent views of self, on
the other hand, which are most often found in collectivistic cultures,
are grounded in a belief that the social unit (i.e., group, family,
tribe, clan, community) should take primary consideration over the
individual.
This interdependent view of self can be found throughout
most minority cultures in the United States. A 1996 article in American
Rehabilitation points out that the concept of the extended family
in Pacific cultures is basic to the nature of its people and has
evolved over two centuries.34 It
says that in Samoan cultures, in fact, the aiga potopoto (extended
family) is regarded as the most important agent in the human equation.
Phillip Ana of the Hawaii Centers for Independent Living noted this
in his testimony. "Working with someone from a Polynesian culture,"
he said, "is working with the family.... It's a very family-oriented
culture." According to Paul Leung, this emphasis on the role of
the family and interdependence is also a hallmark of many Asian
cultures.35 Jean Lin, CFILC empowerment
team leader, agreed with this assertion. "In Chinese culture," she
said, "we honor our family first." The primacy of family and interdependence
has also been documented in Hispanic cultures. Anna Santiago and
colleagues wrote in American Rehabilitation that "service
providers need to understand the importance of the family for Latinos."36
In her testimony, Laura Echegaray, ILRC Latino community disability
educator, described the importance of family and community in Latino
culture:
Latino culture is very proud of their strong family
ties.... I come from a very diverse community--4 million people
in a tiny, small island, where we call ourselves a family. When
I got to San Francisco, I couldn't have survived without my fellow
Puerto Ri cans, who have become my family, even though we are
not related.... I urge you to break the barriers and see us all
as a family.... We all invite you to see us as a family.
A similar invitation was issued a few years ago when
a group of minority professionals with disabilities, largely made
up of African Americans, assembled in Washington, D.C., and formed
an organization called the National Family for the Advancement of
Minorities with Disabilities.
The concept of interdependence and family is equally
important in Native-American culture. Although every American Indian
tribe has its own set of values and beliefs, Carol Locust and Jerry
Lang have noted that one of the common concepts in most tribal groups
is the importance of family, clan, and tribe.37
Randy Feliz, vice chair of the Hopland Band of Pomo Indians, agreed
with this finding. "We are a very family oriented culture," he said.
"No matter where I am, I am never alone. I meet other Indian families
and they take me in, no questions asked."
The tremendous importance of family and interdependence
within U.S. minority cultures is well documented in the current
literature. The primacy of the individual and independence within
U.S. majority culture is an equally well-established fact. Nowhere
is the importance of the individual and independence more apparent
than in the culture of the American disability community.
Since its founding, the disability civil rights movement
in the United States has exemplified many of the values and ideals
promoted in individualistic cultures, including personal independence
and individual autonomy. In the early 1970s, the "independent living
movement" for people with disabilities was christened in California,
largely as a result of the efforts of Ed Roberts, who defined independence
as "control over one's life."38
This emphasis on independence and individual autonomy in the disability
rights movement was reflected in several of the major disability
policies. In 1973, the Rehabilitation Act introduced Individualized
Written Rehabilitation Plans, and in 1975, what eventually came
to be known as the Individuals with Disabilities Education Act was
enacted. Independent living services were officially established
in 1978 to help persons with disabilities to live independently.39
In 1977, Lex Frieden, former NCD executive director and Henry B.
Betts Award recipient, defined "independent living" as "control
over one's life based on the choice of acceptable options that minimize
reliance on others in making decisions and in performing everyday
activities."40
Over the past decade, this emphasis on independence
within the disability civil rights movement has been increasingly
called into question by several segments of the disability community.
Even though, as Adolf Ratzka has said, "Independent living does
not mean that we want to do everything by ourselves, do not need
anybody, or that we want to live in isolation," in the context of
non-western cultures an excessive emphasis on an individualistic-centered
definition of independence can sometimes lead to a feeling of extreme
isolation. In her testimony, Nancy Lim-Yee expressed concern that
for someone from a non-western culture, the American emphasis on
empowerment and independence may seem like telling them to "do it
yourself" and not ask for help. Virginia Thompson noted in her article
that these concerns "regarding the growing emphasis on independence"
are raised because "to some degree, all persons require interdependence...Full
independence may not be an achievable or desirable goal since it
discounts the value of interdependent relations" in our nation.41
In his statement on ADA's final passage, Representative Major R.
Owens (D-NY), also noted that "our nation is one of interdependence;
we do and must rely on one another for success."42
In the context of interdependence found within many
minority communities, terms such as "individual empowerment," "self-sufficiency,"
"independent living," "control over one's life," and "minimal reliance
on others" may seem foreign, quite isolating, and even offensive.
If an independent living philosophy and its related terms and concepts
are not adequately translated and presented in a culturally appropriate
manner, there is potential for conflict with the mind set of many
minority communities, which emphasize the importance of family,
interdependence, and reliance on others, particularly when dealing
with the issue of disability. In her written testimony, Nancy Lim-Yee
noted that there are significant "cultural differences...in the
perception and impact of disabilities on the individual and the
family."
Most Asian and Pacific Island cultures perceive
disability, especially in a child, as a reflection upon and responsibility
of the family (including several generations) as a whole. The
American approach tends to view disability as a matter regarding
the i ndividual and perhaps the parents (but seldom siblings,
grandparents, or extended family).
The perception that disability is a family responsibility
was also voiced in the testimony of Ruben Rangel, a parent of a
child with a disability. "Ever since I was aware of the problem
with Elizabeth," he said, "we decided it was a problem that we had
to live with.... Since that moment, we became aware of our commitment,
our responsibility, and our obligation." Laura Echegaray noted that
even into adulthood, Latino parents "feel responsible to care and
provide for the needs of their adult children with disabilities,
even if they are capable to live on their own."
According to Virginia Thompson, this sense of family
responsibility for disability within many minority communities stems
primarily from the perception of disability that exists within collectivistic
cultures:
Collectivistic cultures tend to view both mental
and physical health as manifestations of group harmony. For example,
both Navajo and Chinese concepts of health are based on harmony
with one's natural universe, while illness is evidence of being
out of ha rmony, often the result of broken taboos or family rules.
Accordingly, such cultures tend to see disability, especially
psychological disability, as something shameful that has been
visited upon the family by spiritual forces and, therefore, as
the family's responsibility to manage. Such beliefs often lead
to a preference for and use of nontraditional medical/spiritual
sources that can return the person to harmony with the group,
thereby resolving the problem through in-group resources.43
Nancy Lim-Yee agreed in her written testimony and
noted the importance of culturally appropriate outreach and parent/family
education:
Disability within minority families may be perceived
by the family and community as a shameful or negative reflection
upon the whole family.... When a child with a disability (or multiple
disabilities) is born to an Asian/Pacific Islander family, that
family must go through a process of identifying the situation
and coping with it emotionally and practically, within a social
and cultural context. They are likely to look first within the
family and within their own ethnic/cultural community health and
spiritual systems for help. Seeking help outside the community,
especially when one doesn't know what to ask for or what is available,
is likely to be a last resort and a response to crisis. At this
stage, culturally appropriate and linguistically accessible outreach,
parent/family education, and support are critical.
Nancy Lim-Yee's remark underscores the need for education
and outreach to families of minority individuals with disabilities,
as well as to minority communities, in order to provide support
in dealing with the impact of disability and, in turn, increase
awareness about available resources and the experience of disability.
In her recommendations, she suggested that NCD "encourage local
and statewide media to bring awareness of disability issues to the
ethnic and general communities." Several other participants at the
1998 NCD hearing agreed and supported the idea of using the media
to increase awareness about disability within both minority and
majority communities. In her testimony, Lourdes Mugas-Talan stated
that "there should be more public education in the media to let
people know about ADA," and Rudy Stefany noted that "we need more
education for people who are so-called "normal" about people with
disabilities." Chan Y. Yu, a member of the San Francisco Chinese
Blind Support Group, agreed with Mr. Stefany's suggestion and provided
a personal example of the need for community education through the
media:
For the past few years, I haven't noticed much
government publicity on the cane used by blind people. For example,
I went to town using a 3-section cane. When I came to Market Street,
I didn't know what had hit. A man pushed me and broke my cane.
I brought it with me today. It is broken. But that man is gone.
I couldn't do a thing....Currently, there is another kind of cane,
and it's long and portable. It is white, red, and white, but not
many people know about it. They thought you were pretending to
be blind...so I think the government should let the public know
about the white cane used by the blind. We hope the public will
know more about blind people.
Another member of the San Francisco Chinese Blind
Support Group concurred with Chan Y. Yu. "We use a...cane," she
said, "and no one can see that, especially the White people. There
is so much trouble. I hope the government will use more media to
educate people so that the blind can have some conveniences."
As Leroy Moore noted in his testimony, however, it
is not enough to simply use the mainstream media. To reach minority
group members with disabilities and their families effectively,
he said, and to increase awareness within minority communities,
targeted advertising must be conducted in minority media:
We have to question why this conference and other
disability events are not published in minority magazines and
newspapers like the Sun Reporter, the Bayview San Francisco,
and Asian Weekly.... The Bay Area has a lot of ethnic minority
media, and if you want the involvement of ethnic minorities, you
have to advertise in minority media.
David Freeman, of the San Francisco State University
Institute on Disability, strongly agreed with this recommendation.
He noted the additional importance of directly involving minority
community groups and churches in the outreach process:
Extensive outreach methods should be adopted. New
ideas should be implemented to ensure everyone in a community
knows about resources and/or services. Churches, recreational
facilities, etcetera, should be contacted and brought into the
process simply be cause many minorities still hold these institutions
very important to daily life.
Elsa Quezada, executive director of the Central Coast
Center for Independent Living, also noted the importance of "developing
partnerships with community groups and churches." "The community
must be your office," she said. "In order for outreach to be effective,
you have to be committed to going out into minority communities
and distributing information in places frequented by minorities."
One program that has had success in this area is Black Pearls in
Brooklyn, New York. To increase awareness about breast cancer, Black
Pearls distributed information through 11l beauty shops in the community
frequented by minority women. One of the beauty shops runs a video
about breast cancer on a small television set and encourages customers
to fill out questionnaires measuring their knowledge of breast care
as they have their hair done. The owner of the shop receives 50
cents per questionnaire and $100 per month for providing this outreach.44
According to Nancy Lim-Yee, the need for education
and outreach does not go in one direction only. Awareness about
disability issues needs to be increased within minority communities,
but there is an equally profound need to increase awareness about
minority cultural issues within the disability community. While
"the ethnic community agencies often know little about disabilities,"
Ms. Lim-Yee said, "the mainstream" disability organizations know
even less about how to be "culturally and linguistically accessible."
Mark Wilkerson of the California Foundation for Independent Living
Centers agreed with this point in his testimony. "I feel like the
disability rights movement suffers from 'isms,'" he said. "Racism,
sexism, and not a whole lot has really changed since the outset."
Nicole Brown-Booker echoed this sentiment in her testimony:
The main issue I would like to talk about is the
inclusion of people with disabilities within disability organizations
themselves. I've been working in the disability community for
about three years now...and have always felt that there wasn't
anybody else out there that looked like me. Even in the disability
organizations that I've been a part of since I moved to Berkeley,
there aren't a lot of people of color represented within those
organizations. I believe the movement has taken on issues of people
with disabilities to be included in society, but has not necessarily
focused on the needs of people of color within the movement. There
are a lot of issues that they are faced with that...a Caucasian
person with a disability might not recognize.
One disability organization in California that has
had success in incorporating the needs of minority individuals with
disabilities and their families is Community Resources for Independence,
the Sonoma County ILC in Santa Rosa, California. In 1995 and 1996,
CRI opened two branch offices in Mendocino and Lake counties in
order to improve education, outreach, and service delivery to underserved
populations in these surrounding areas, particularly Native Americans.
According to Randy Feliz, vice chair of the Hopland Band of Pomo
Indians, there are approximately 20 federally recognized reservations
or rancherias in Mendocino, Lake, and Sonoma counties, with an estimated
population of 6,000, representing about 26 percent of the total
population for these counties. The issues of poverty, isolation,
alcoholism, and poor health care are so widespread in this area
that those with disabilities find that their specific needs are
very low priorities.45, 46
In order to respond to the needs of Native Americans
with disabilities, CRI developed an outreach plan based on cultural
respect, mutual education, and a clear understanding that "the Native
American community must be the driving force" behind "any project
or activity...undertaken."47 In
1995, CRI received a grant from the California Department of Rehabilitation
to launch the Native American Community Organizing Project (NACOP),
a fundamental part of CRI's outreach program. CRI hired a Native
American Community Liaison Coordinator to assist in its outreach
efforts to the various tribal communities in the area. These outreach
efforts included letters, phone contacts, and active involvement
in the community through participation in several Tribal Council
meetings, community social gatherings, and Indian Health Center
meetings.48
In 1996, CRI's outreach efforts continued with the
organization of a meeting in Ukiah to begin planning to apply for
a Section 130 grant to bring Native American vocational rehabilitation
services to the Sonoma, Mendocino, and Lake counties. Soon after
this meeting, CRI received a grant from the California PAS Project.
With this grant and additional funding from several Tribal governments
and casinos, CRI and the NACOP director proceeded to research, organize,
and develop a resource manual entitled Accessing Native Americans
with Disabilities. In November 1996, this manual was distributed
to several agencies within the state, including SILC, California
ILCs, the Native American Reservation/Rancherias in California,
and the California Department of Rehabilitation. Shortly before
the distribution of this resource manual, CRI conducted targeted
recruitment of Native Americans with disabilities in the surrounding
area to be representatives on the Native American Disability Advisory
Council, which was charged with overseeing and monitoring the NACOP's
progress toward developed goals and objectives. In April 1998, CRI
and the members of the Native American Disability Advisory Council
submitted an application for a Native American Independent Living
Center grant.49 This would have
been the first ILC of its kind in California, but CRI was subsequently
informed that neither this grant nor the Section 130 Project grant
had been funded. The NACOP funding, furthermore, was not renewed
in 1998.
In spite of these setbacks, CRI has continued its
commitment to meeting the unique needs of Native Americans with
disabilities in its service area. CRI has accomplished this goal
by maintaining a presence within the tribal communities, thereby
establishing a sense of trust within those communities; providing
education for tribal members on disability issues; hiring Native
Americans with disabilities to provide training for CRI staff on
Native-American cultural issues; and continuing outreach efforts
by using local newspapers and other minority media that target the
Native American community and by distributing brochures and flyers
in places frequented by Native Americans.50
As CRI's example illustrates, increasing awareness
among minority individuals with disabilities and their families
requires a long-term commitment, a visible presence in minority
communities, and the development of a culturally appropriate outreach
plan that has been established in collaboration with minority community
groups. As witnesses at the 1998 NCD hearing in San Francisco indicated,
an outreach plan must demonstrate a fundamental understanding of
the cultural differences between minority and majority cultures.
The strengths of minority cultures should be emphasized, including
the role of the family and the importance of interdependence. The
reliance in minority cultures on support systems internal to their
ethnic communities should also be recognized and incorporated into
all outreach efforts. Minority individuals with disabilities must
be empowered as agents of change, who will work together toward
altering their social status within their cultural communities.
This element should also be incorporated through the use of minority
media, the development of partnerships with community groups, and
targeted distribution of information in places frequented by minorities.
Recommendations
- Congress should amend the definition of "minority
entities" under Section 21 of the Rehabilitation Act to once again
include "community-based minority organizations."
- Congress should ask GAO to investigate the cultural
and linguistic appropriateness of public information activities
related to ADA, IDEA, the Fair Housing Act, and other federal
civil rights disabilities laws.
- The Departments of Education, Health and Human
Services, Labor, and Transportation, as well as the SBA should
require their grantees and field offices to develop a culturally
appropriate outreach plan that takes into account the fundamental
differences between majority, minority and sovereign tribal cultures.
- The National Institute on Disability and Rehabilitation
Research should require its research and training centers with
emphasis on minority populations to develop and test guides describing
the services provided by independent living centers that use appropriate
cultural and linguistic terminology for diverse populations. Once
these guides are produced, RSA should require CILS and SILCs to
use the guidelines to improve their outreach and service delivery
to diverse populations.
- Federal agencies funding outreach efforts should
encourage initiatives directed not only toward diverse individuals
with disabilities, but also toward their families and community
organizations.
- Federal agencies conducting or funding outreach
should emphasize that successful outreach requires an awareness
of the perception of disability and related concepts like independent
living that exists within a particular cultural community.
Section 21 of the 1992 amendments to the Rehabilitation
Act directed the commissioner of the Rehabilitation Services Administration
to develop a "plan to provide outreach services" to "minority entities"
in order to "enhance their capacity and increase their participation
in competitions for available financial assistance." Under the 1992
amendments, "minority entities" were defined as (1) Historically
Black Colleges and Universities, Hispanic-serving institutions of
higher education, and other institutions of higher education whose
minority student enrollment is at least 50 percent; (2) nonprofit
and for-profit agencies at least 51 percent owned or controlled
by one or more minority individuals; and (3) underrepresented populations.
In response to this congressional mandate, RSA launched
the Capacity Building Project in 1996 with the awarding of 17 grants
to various educational institutions and nonprofit service agencies
for the provision of outreach services to minority entities.51
San Diego State University (SDSU) was among the 12 educational institutions
that received RSA capacity building grants. According to Mari Guillermo,
the capacity building project coordinator at SDSU, the SDSU project
has been particularly successful in its outreach efforts to community-based
minority organizations. In its first two years, more than 15 minority
owned/controlled businesses received focused technical assistance
from the SDSU project, and a participatory capacity building consortium
was formed to promote collaboration and networking between community-based
minority organizations that serve individuals with disabilities.52
Despite such gains, in the 1998 amendments to the
Rehabilitation Act, community-based minority organizations were
deleted from the definition of "minority entities" under Section
21. The new definition describes "minority entities" as institutions
of higher education, which include American Indian Tribal colleges
or universities, Historically Black colleges and universities, Hispanic-serving
institutions, and other institutions of higher education whose minority
enrollment is at least 50 percent.53
When questioned about this omission, an official of
RSA's Capacity Building Project said he was "not sure why community-based
minority organizations were left out of the amended definition of
'minority entities.'" "Although the 1998 amendments broadened what
can be done," he said, "they also narrowed the target population...and
this will have a direct impact on who we can reach." Another official
for RSA's capacity building effort said the deletion of community-based
minority organizations "will have a negative impact" on the overall
goals of the project because these organizations play "an essential
educational role in minority communities." An internal e-mail message
circulated among RSA Capacity Building Project directors and minority
community-based organization representatives further states:
This deletion concerns us greatly because it affects
the mission of our capacity building efforts, and more importantly
it disregards the important role CBMOs (community-based minority
organizatons) play in the lives of minority individuals with disabilities
and their families from different cultures....Traditionally, [these]
grassroots agencies have been the greatest source of support for
individuals with disabilities and their families since the traditional
service systems do not always reach [minority] communities.54
Given the essential service and outreach link that
community-based minority organizations provide to minority individuals
with disabilities, NCD recommends that steps be taken to address
this setback. The issue should either be addressed in the rulemaking
process or through an amendment to the Rehabilitation Act that includes
community-based minority organizations in the definition of "minority
entities" under Section 21.
All publicly funded programs serving individuals with
disabilities should be required to develop a culturally appropriate
outreach plan that includes outreach goals and objectives, and mechanisms
for evaluation of outcomes. This plan should also take into account
some of the fundamental differences between majority and minority
cultures. For example, the independent living philosophy should
be translated and presented in a culturally appropriate manner.
In order to promote meaningful inclusion of minority
individuals with disabilities and their families in the disability
community, concepts that are fundamental to the independent living
movement, such as "individual empowerment," "self-sufficiency,"
"independent living," "control over one's life," and "minimal reliance
on others," need to be translated and presented in a culturally
appropriate manner. The role of interdependence, furthermore, should
be considered as an equally viable alternative to independence in
the current philosophy, goals, and practices of the movement.
Given the reliance in minority cultures on support
systems internal to their ethnic communities, all outreach efforts
should be directed toward these internal social structures, which
include the family, religious organizations, recreational facilities,
community groups, and other social institutions important in the
lives of minority group members.
In order to effectively reach minority individuals
with disabilities, all disability service agencies must be aware
of the perceptions of disability that exist within certain cultural
communities, and the ways in which these perceptions can influence
the willingness of minority individuals with disabilities to use
services provided by an agency outside of the family and/or cultural
community.
b) Language and Communication Barriers
As Kazue Lowenstein noted in her testimony, another
important aspect of outreach and culturally competent service delivery
that is routinely overlooked is "the language issue." For individuals
who speak limited or no English, language barriers in particular,
such as lack of bilingual service providers, interpreters, and language-appropriate
materials, are a major obstacle to getting the resources they need.
Xie Yu Ying had difficulty in all of these areas when she attempted
to apply for Social Security benefits:
I went to the Social Security bureau, but they
all spoke English. I didn't understand any English. I found it
was very difficult.... I obtained a form, but it was printed in
English. I had to find someone to help me fill it out. I took
it back two to t hree months later. I had more trouble when I
handed it in because I didn't know any English and no one around
could help me. I went there at 9 a.m. and waited till late. I
saw someone Chinese coming this way, so I asked them what else
I needed to provide. I spent a few more hours and didn't get back
until 4 p.m. So I would like to request the government to have
bilingual workers there to help us.
As Xie Yu Ying noted in her testimony, one of the
main barriers to service delivery for limited- or non-English speaking
individuals with disabilities and their families is the absence
of service personnel who are bilingual. Laura Echegaray, ILRC Latino
community disability educator, also noted the prevalent lack of
bilingual service providers. "It is rare to find service providers
who speak or understand Spanish," she said. "This limits access
to information about rights, benefits, employment programs, and
other opportunities." Manuel Vasquez, director of Mission Mental
Health Services in San Francisco, concurred with this sentiment
in his testimony. "One of the major difficulties experienced by
disabled Latinos," he said, "is the lack of cultural access to many
support services because of a lack of language capacity among many
service providers."
The need for bilingual service providers is particularly
apparent in the area of special education. According to the testimony
of Maggie Dee, president of California Democrats with Disabilities,
"parents" of children with disabilities "who are non-English speaking"
have tremendous difficulty "finding appropriate agencies to assist
in language-appropriate help" when "trying to enroll their child
or children in special education for the first time." Anthony Rienzi,
a psychiatrist at Alta Bates Medical Center, also noted that "youth
with disabilities and their parents" who "only speak Spanish or
an Asian language" have "problems...when trying to obtain [related]
services." Gui Lan Lam, a parent who had difficulty obtaining services
for her daughter, Mimi, testified of problems that arose as a result
of "the language barriers" when she was applying for assistance
for her daughter. Donna Reid, a mother of two children with disabilities,
said that when parents who "have language barriers" are unfairly
denied related services, they are "often afraid to speak up because
communication alone prevents them from being able to adequately
question the process."
Even if parents are able to enroll their children
in special education and obtain related services for them, they
still face significant language barriers in everyday communication
with school personnel. Ramona Chacon, a parent of a child with a
disability, said one the greatest "challenges monolingual parents
have with the school district is not being able to communicate with
the personnel." As Nancy Lim-Yee pointed out, "While interpreters
are provided for "official" meetings, like IEPs, they are seldom
available for informal, everyday communication." This issue is further
complicated for minority parents of children who are deaf or hard
of hearing. Not only do they need access to a spoken language interpreter,
they also need access to an American Sign Language interpreter.
Cheryl Wu and Nancy Grant, who work for the Hearing Society for
the Bay Area, discussed this issue in their written report:
When parents speak one language, services are offered
in English, and their child uses American sign language, interpreters
can be helpful; however, three-language communication takes a
lot of time, patience, and skilled management.... Evaluating interpreter
skills can be difficult; finding and paying fairly for an interpreter
with the language(s) you need, and having them available when
you need them can be difficult.
Several other participants at the hearing also noted
the lack of access to interpreting services. In his testimony, Liu
Fu Hai said he has had "problems finding an interpreter." Even though
Yu Su Xiao had access to an interpreter when he applied for workers'
compensation, the interpreter "didn't help," he said, "but instead,
called up the guard to drive me out the door." Ming Quan Chang,
a family and child advocate at Cameron House, noted that one of
her clients "had to wait at least four hours at a hospital to get
an interpreter." Once the interpreter was provided, her client still
had "difficulty understanding." Even though the interpreter "translated
exactly what the doctor said," Ming Quan Chang pointed out that
"there's still a cultural gap among Chinese, Vietnamese, and American
culture." Cheryl Wu and Nancy Grant agreed with this observation
in their written report:
Interpreters are a valuable resource in many situations;
however, they do not solve the problem of communication either
between deaf and hearing or between spoken languages.... Too often
interpreting/translation addresses only "words," and doesn't take
into account the need for translation of cultural concepts, behaviors
and body language, expectations about relationships, and jargon
(medical terms, educational acronyms). Printed as well as spoken
communication needs to address these issues.
Laura Echegaray concurred and further suggested that
agencies should "try to avoid literal translations as much as possible"
because "there are many terms that turn very complicated or lose
sense when translated." "It is better to produce culturally appropriate
adaptations," she said, "based on the available English information."
In her testimony, Rocio deMateo-Smith, executive director of California
Area Board 5 on Developmental Disabilities, provided an example
of the complications that can happen when interpreters "only address
words":
I just had to help out with a situation where a
Farsi-speaking family was not receiving the services they needed.
The main block was the Farsi-speaking [interpreter], who was the
only road into that family's information. Sometimes when you do
not have the right information giver, you are at that much of
a disadvantage.
As Cheryl Wu and Nancy Grant noted, communication
problems can also occur on the basis of cultural differences in
body language and communication styles. Nancy Lim-Yee says that
the "'body language' of nodding and smiling signifies agreement
in American culture," but in "many Asian cultures it is a way of
keeping harmony, saving face, and does not necessarily reflect agreement
regarding the topic being discussed." Paul Leung has noted that
"Communication styles have contributed to misunderstanding between
Asian Pacific Americans and others. Strong emotional confrontations
are not generally as well accepted with Asian cultures and the desire
is to keep things on an even keel."55
In her testimony, Beverlyn Lee observed that her communication style
has also been misunderstood:
As an African American woman, I come from a proud
tradition of oral history. My communication style is consistent
with my cultural and ethnic background....Oftentimes my communication
has been misinterpreted as hostile or aggressive.
Other language and communication barriers discussed
at the 1998 NCD hearing include direct telephone access, limited
funding for translation and interpretation services, and the absence
of translated materials in alternative formats. Cheryl Wu and Nancy
Grant reported that "Phone trees and English only answering systems
are a serious barrier to access." Laura Echegaray emphasized the
tremendous need for "direct telephone access to Spanish-speaking
service providers."
In her testimony, Shiva Schulz, director of employment
support services at the Association for Retarded Citizens in San
Francisco, said that ARC recognized "the importance of readily available
funding for ESL services, and ESL services that are appropriate
for individuals with disabilities, but we have not found suitable
options in the community or funding for us to offer it at our site."
Nancy Lim-Yee also felt that "more funds" should be made "available
to translate important materials and information into various Asian/Pacific
Islander languages, and to put information on videotape for families
who may not be literate." Lourdes Mugas-Talan of the Hawaii Centers
for Independent Living agreed. To address the "language barriers,"
she said, there should be funding "to make the printed materials
available for people in their own languages...and to share information
by video." Kathy Abrahamson and Kathy Knox, who work for the Rose
Resnick Lighthouse for the Blind in San Francisco, noted in their
written report that "Nonprofit agencies cannot generally afford
to produce information in both alternative format and more than
one language; governmental agencies and services, according to several
of our respondents, make no attempt to do either."
Following the 1998 NCD hearing, Ms. Abrahamson and
Ms. Knox conducted a series of interviews and found that another
language and communication barrier for people from diverse cultural
communities who are blind or visually impaired is the almost complete
absence of language-appropriate materials available in alternative
formats, particularly from governmental agencies and services. "Forms
that might be available in Spanish or Chinese," they wrote, "are
also only available in very small print."
Recommendations
Based on the testimony presented at the 1998 NCD hearing,
therefore, it is clear that minority individuals with disabilities
and their families still encounter multiple language and communication
barriers in signed, written, and spoken language. Among these barriers
are the lack of bilingual service providers, interpreting services,
and language appropriate materials; differences in body language
and communication styles; and English-only phone services, limited
funding for translation and interpretation services, and the absence
of translated materials in alternative formats. To address these
language and communication barriers, NCD makes the following recommendations.
- The Departments of Education, HHS, HUD, and DOT
and the SBA should require that their field offices and grantees
conduct targeted recruitments and hiring of diverse individuals
who are bilingual and bicultural, especially diverse individuals
with disabilities.
- The Office of Special Education and Rehabilitative
Services should issue a policy memorandum mandating targeted recruitment
and hiring of bilingual special education staff at all levels.
- Federally funded disability programs should conduct
targeted recruitment and hiring of minority individuals who are
bilingual and bicultural.
In order to address the lack of language capacity
among many disability service providers, NCD recommends that all
disability service agencies, particularly those in areas with a
high minority concentration, conduct targeted recruitment and hiring
of minority individuals who are bilingual and bicultural. Minority
group members with disabilities and their families who are limited-
or non-English speaking need to have direct and immediate access
to qualified, bilingual disability service staff who are sensitive
to their cultural needs and knowledgeable about resources available
in their cultural community.
- RSA should include language interpreter information
and referral as a core service at all centers for independent
living servicing significant populations of non-English-speaking
people within their service area.
- RSA should require all Centers for Independent
Living (CIL) with significant non-English speaking populations
in their service area to develop language/communication action
plans that include:
- Establishing contacts within minority community
agencies who can assist in facilitating communication with ethnically
diverse populations.
- Developing a language interpreter referral database
that is available in multiple languages and alternative formats,
including the World Wide Web.
- Sending all existing or new translated materials
to the SCLC for widespread distribution to other Centers for Independent
Living and related agencies/organizations in the state.
- Establishing sign language and other language and
other interpreter/translator training programs that provide instruction
on translation of cultural concepts, behaviors and body language,
expectations about relationships, and other technical disability-related
terms (e.g., medical terms and educational and legal acronyms).
- Providing language-dedicated telephone lines in
Spanish and other languages with information in bilingual formats
on Web pages.
- The Departments of Education, Health and Human
Services, Housing and Urban Development, Labor, and Transportation
and the Small Business Administration should make available adequate
funding to all field offices and grantees for translation and
interpretation services.
- Congress should ask GAO to investigate the quality
of service delivery for diverse individuals with disabilities
and their families in terms of language and cultural competence.
Although several disability service agencies have
recognized the importance of readily available interpreter and translation
services, few funding sources are available to provide these services.
To address this situation, several witnesses at the hearing suggested
that more funding should be provided for interpretation and translation
of important agency materials into both bilingual and alternative
formats. Funding was also requested for the specific purpose of
translating agency materials and placing them on videotape for minority
individuals and their families who may be illiterate or have a significant
learning disability.
D. BARRIERS TO CITIZENSHIP
1. Overview
This chapter discusses the history of U.S. immigration
policy concerning people with disabilities. Although overt official
bias has largely been eradicated, as this report described earlier,
systemic obstacles remain to fair and efficient consideration of
citizenship applicants with disabilities. These include reasonable
accommodations in the areas of testing, fingerprinting, and the
oath of allegiance.
The National Council on Disability recommends that
the U.S. Department of Justice conduct a thorough investigation
of INS policies and practices concerning people with disabilities.
The Immigration and Naturalization Service should institute clearer
accommodation policies and train staff to process such requests.
NCD also recommends that Congress authorize the Attorney General
to waive the oath requirement as appropriate.
2. Analysis
"The disability movement has been viewed as a White,
middle-class movement, and we're demonstrating the need to enforce
the civil rights and legal rights among immigrants and people of
color," says Stephen Rosenbaum, a senior litigation attorney for
the Disability Rights Education and Defense Fund (DREDF) in Berkeley.
"We are bringing together immigrant and disability communities,
making each aware of the other's concerns because some are doubly
marginalized or disenfranchised. But then, what greater enfranchisement
is there than obtaining citizenship for this group?"56
According to San Francisco immigration lawyer Eugene
C. Wong, "Congress has called naturalization the most valued governmental
benefit of this land." Pun Fong Chi, a Chinese national recovering
from colon cancer, expressed this sentiment in her testimony at
the 1998 NCD hearing in San Francisco when she presented the members
of NCD with one solitary request:
I have a wish, that is to become an American citizen.
I went to study naturalization at Xin Qiao Service Center, a nonprofit
organization. The teacher is very good. I study very hard. I now
hope the government will give us mental support and encouragement
so that it won't be too hard to become citizens.
Unfortunately for Pun Fong Chi, and for the thousands
of immigrants with disabilities like her, the United States has
a long and well-documented history of discouraging and actively
restricting the immigration and citizenship of people with disabilities,
especially those from certain racial and ethnic communities. At
the end of the 19th century, Congress passed several acts that provided
for the physical examination of immigrants, and excluded from the
United States those who were found to be "convicts, polygamists,
prostitutes, persons suffering from loathsome or contagious diseases,
and persons liable to become public charges."57
One of these acts, the Chinese Exclusion Act of 1882, specifically
barred not only the admission of Chinese but also the admission
of "lunatics and idiots." In 1903, Congress took this one step further
to bar the admission of people with epilepsy.58
These immigration restrictions for people with disabilities
continued throughout the 20th century. They increased in scope and
intensity after 1907, when the United States admitted the highest
number of immigrants in its history.59
There have been several calls for immigration restrictions explicitly
linked to the exclusion of people with disabilities. In 1917, E.
J. Emerick, president of the American Association for the Study
of the Feeble-Minded, warned against the free admission of immigrants,
an alarming number of whom he said were "mentally deficient."60
Heeding this warning, Congress considered legislation in 1917 to
bar "persons of constitutional psychopathic inferiority."61
In that same year, Henry H. Goddard began administering Stanford-Binet
intelligence tests to immigrants on Ellis Island. According to Goddard's
1913 report to the American Association for the Study of the Feeble-Minded,
the administration of these tests to immigrants was useful because
"the Binet scale could detect the mentally defective more quickly
and more accurately than methods being used by physicians."62
It was during this prewar period that well-known eugenist Madison
Grant issued his own warning against the immigration of people with
disabilities from diverse cultural communities in his best-selling
book, The Passing of the Great Race. Unless the country excluded
inferior racial and ethnic groups, Grant warned, the superior Nordic
strain would be overtaken by "the weak, the broken, and the mentally
crippled."63 This sentiment was
expressed even as late as 1945 when E. Arthur Whitney argued that
"a thorough screening by the immigration authorities would eliminate
not only the mental defectives but those of mental defective or
psychopathic stock who will be clamoring for admission now that
World War II is at an end."64 It
was not until 1965 that Congress finally removed the majority of
the immigration restrictions outlined above for people with disabilities.65
It is clear, therefore, that over the past century the United States
has done little to fulfill the request of Pun Fong Chi to support
and encourage the immigration and citizenship of people with disabilities
from diverse cultural communities.
In spite of the legislative reversal more than 30
years ago, the pattern of discouraging and actively restricting
the immigration and citizenship of people with disabilities continued
into the end of the 1990s through a more subtle and indirect exclusionary
practice of denying immigrants with disabilities their right to
reasonable accommodations in the naturalization process. This issue
came to a head two years ago, in the wake of congressional welfare
reform efforts, when immigrants with disabilities throughout the
United States suddenly faced the possibility of losing their medical
and Social Security benefits if they did not become U.S. citizens.
On August 22, 1996, President Clinton "ended welfare
as we know it" by signing into law the Personal Responsibility and
Work Opportunity Reconciliation Act of 1996, more commonly known
as the welfare reform law. This piece of legislation dramatically
altered the welfare system and restricted access by legal and illegal
immigrants to a wide range of public benefits, including Supplemental
Security Income and food stamps. In addition, it gave states the
discretion to determine whether legal immigrants would continue
to be eligible for federal cash assistance under several federal
programs, one of which was Medicaid.66
In California, SSI/SSP (State Supplementary Program) recipients
are categorically eligible to receive Medicaid (known as Medi-Cal
in California) and In-Home Supportive Services (IHSS). Although
the IHSS program was not specifically mentioned in the welfare reform
law, in California IHSS benefits are limited to persons who are
eligible for SSI/SSP.67 As a result,
upon enactment of the federal law, a majority of the noncitizens
in California were not only ineligible for SSI/SSP, as of January
1, 1997, they were also ineligible for Medi-Cal and IHSS.
According to the state legislative analyst's office,
as of July 1996 approximately 330,000 legal noncitizens were receiving
SSI/SSP in California, representing about 40 percent of all the
noncitizens in the United States receiving SSI.68
The California Department of Social Services estimated that 243,700
of those recipients were unlikely to meet any of the exception criteria
outlined in the federal law, which included refugees and asylees
in their first five years of residence, veterans and their dependents,
and lawful permanent residents who have worked in the United States
for approximately 10 years. As a result, almost 74 percent of the
legal noncitizens in California stood to lose their SSI benefits,
and other related benefits (Medi-Cal/IHSS), if they had failed to
attain U.S. citizenship before enactment of the federal welfare
reform law.
On June 23, 1997, NCD released a position paper on
the "Impact of the Welfare Reform Legislation on Legal Immigrants
with Disabilities," which expressed "serious concern...at the economic,
physical, and emotional injury that the 1996 welfare reform legislation
will inflict...on legal immigrants with disabilities."69
Among those hardest hit by the law, NCD predicted, would be "the
permanently disabled who are dependent on SSI, food stamps, and
Medicaid for their support and medical care":
The denial of benefits will require immigrants
with disabilities to rely even more heavily on others, stretching
the resources of their families and sponsors (if they have family
and sponsors) who, though gainfully employed, in many cases do
not have sufficient resources to support them. Without SSI payments,
food stamps, and Medicaid, state and local governments and private
charities will become the prime source of assistance to legal
immigrants with severe disabilities, and there is reason to fear
that competing interests and agendas and thinning budgets will
prevent these groups from adequately filling the gap.
To address this situation, NCD recommended, among
other things, that "naturalization be afforded to all qualifying
individuals with disabilities, regardless of the severity of the
disability." President Clinton responded to the concern by issuing
a directive to all Cabinet agencies to provide support for the naturalization
of immigrants who qualified and desired to become U.S. citizens.70
In spite of this directive, the "support" that President Clinton
called for was not forthcoming insofar as immigrants with disabilities
were concerned, particularly from the agency responsible for the
processing of citizenship applications, the Immigration and Naturalization
Service. As NCD noted in its 1997 position paper, the welfare reform
act "has served to highlight a fundamental problem with the immigration
laws of this country," that is, the inability of individuals with
severe disabilities to become U.S. citizens. According to the written
testimony of Stephen Rosenbaum, a senior litigation attorney for
DREDF in Berkeley:
Although the Justice Department's regulations for
enforcement of nondiscrimination on the basis of disability in
federally conducted programs became effective in 1984, the INS
has never taken Section 504 seriously and the agency has demonstrated
their unfamiliarity with and reluctance to carry out its responsibilities
under these regulations.
It was only after DREDF filed a nationwide class action
lawsuit against INS in 1996 that INS finally adopted regulations
implementing federal "disability waivers" as required by the Immigration
and Nationality Technical Corrections Act of 1994, which had been
passed by Congress more than two years earlier. This statute exempts
citizenship applicants with "physical and developmental disabilities"
or "mental impairments" from the citizenship requirements of English
literacy and knowledge of U.S. civics.71
Despite these regulations, as NCD noted in 1997, "given the backlog
of citizenship applicants, there are no assurances that newly exempted
immigrants will be able to take advantage of the new rules in time
to prevent their benefits from being cut off."72
In addition to prolonging the adoption of regulations
implementing federal "disability waivers," INS has continued to
erect other barriers to citizenship for immigrants with disabilities,
particularly for those with developmental, psychiatric, and significant
physical disabilities. In oral and written statements for the 1998
NCD hearing in San Francisco, Stephen Rosenbaum testified on behalf
of 10 citizenship applicants with disabilities who alleged that
they were currently being discriminated against by INS through the
denial of reasonable accommodations and policy modifications in
three particular stages of the naturalization process: the naturalization
interview, fingerprinting, and the execution of a "meaningful" oath
of allegiance.
a) Naturalization interview
On July 2, 1998, DREDF attorney Jesiros D. Bautista
and the law offices of Eugene Chi-Ching Wong in San Francisco filed
a joint complaint with the U.S. Department of Justice alleging that
the San Francisco District INS Office had violated Section 504 by
failing to accommodate six citizenship applicants with significant
disabilities who were unable to leave their homes.73
Among the applicants was a woman residing in San Francisco who was
unable to leave her bed following a series of surgeries over the
past decade to correct a joint and pelvic problem. She was able
to attend her last doctor's appointment only by remaining completely
supine in an ambulance. Similar transportation to the San Francisco
INS office for the naturalization interview and oath-taking ceremony
would cost this woman approximately $1,150 for each trip, the complaint
said, and would entail a great deal of physical danger and pain.
As a result, when she filed her naturalization application, her
attorney requested a telephone or in-home interview as a reasonable
accommodation. On February 4, 1998, however, she received a telephone
message from INS informing her, with no further explanation, that
her request for an accommodation had been denied.
Another applicant, an 82-year-old Thai national, was
on a constant feeding tube as a result of a stroke and could communicate
only by blinking. In August of 1997, her attending physician wrote
a letter to INS explaining that this woman could not leave her bed,
and that to do so would endanger her health. The physician and the
woman's daughters requested "other arrangements" in lieu of an office
interview. The woman's attorney repeated the request for an in-home
interview less than a year later. In spite of these repeated requests
for accommodation, an INS representative phoned the attorney to
say that INS lacked the resources to conduct in-home interviews.
Two other complainants were an 88-year-old Chinese
national and a 69-year-old Chinese national, both of whom are unable
to leave their homes because of their significant disabilities.
Each of these applicants requested an in-home interview as a reasonable
accommodation from INS, but neither of these applicants had received
a response by the time the complaint was filed.
The remaining applicants were a 93-year-old Argentinean
national and a 93-year-old Iranian national. The first woman was
supported by a feeding tube and remained permanently in bed with
multiple disabilities, including dementia, blindness, and Parkinson's
disease. The other woman was fed intravenously and was unable to
leave her bed because of permanent and progressive Alzheimer's disease.
Each of these women requested an in-home interview as a reasonable
accommodation from INS. INS ignored their requests, and they were
sent a notice to come to the INS office in San Francisco for an
on-site interview.
As a federal agency, INS is subject to the provisions
of Section 504 of the Rehabilitation Act of 1973, which prohibits
discrimination against people with disabilities by any "program
or activity receiving federal financial assistance."74
Under the regulations for Section 504, the naturalization process
is considered a "federally conducted program or activity," and INS
is required "to make reasonable accommodations and modifications"
for "qualified individuals with a disability" who are participating
in the naturalization process.75
Clearly, the complaint said, all of the applicants mentioned above
were "qualified individuals with a disability." They had a "physical
or mental impairment which substantially limits one or more" of
their "major life activities," and they met "the essential eligibility
requirements" to become a U.S. citizen.76
Despite this, they were all apparently denied their legal right
to a reasonable accommodation in the naturalization process. Their
requests for a telephone or in-home interview were either denied
or left unanswered, or they were told that INS lacked the resources
to conduct in-home interviews.
A public affairs director for the San Francisco District
INS office was quoted in both the San Francisco Chronicle
and Asian Week as saying that INS has "always tried to provide
for the disabled."77, 78
"Every single day," she said, "we make accommodations for the disabled
that are able to come to the office for interviews by arranging
for special hours or providing for special accommodations that will
ensure their comfort and expedite their naturalization." Whether
or not INS accommodates applicants with disabilities who are able
to go to the office, however, is not the issue in dispute in this
particular complaint. When questioned by a reporter about the specific
charge in the DREDF complaint that INS fails to accommodate applicants
with significant disabilities who are not able to leave their home,
the INS official categorically denied this charge and noted that
in June 1998 a Santa Rosa resident was naturalized at her bedside.
As Janet Dang of Asian Week pointed out, however, even though the
Santa Rosa resident was naturalized at her bedside, the preliminary
interviews for this applicant took place at the INS office.79
According to Stephen Rosenbaum's written testimony,
in a March 12, 1997, internal INS policy memorandum, it recognized
that "making acceptable accommodations or modifications to the entire
naturalization process is [INS's] mandate under the Rehabilitation
Act of 1973."80 "Similarly," Rosenbaum
argued, "in the preamble to the final regulations implementing the
disability waiver it states that 'it is current Service policy to
conduct off-site testing, interviews, and, where authorized, off-site
swearing-in ceremonies in appropriate situations.' "81
The six cases mentioned in the complaint and described above are
all arguably "appropriate situations" for an off-site interview
given that an on-site interview in all of these cases would either
severely compromise the applicant's health or be prohibitively expensive.
According to the testimony of Stephen Rosenbaum, however, these
cases are not unusual. When it comes to accommodating citizenship
applicants with disabilities, these problems exist in every area
of the naturalization process, including the fingerprinting requirements.
In response to criticism that there is no standard
method for applicants with disabilities to request accommodations
in the naturalization process, in its 1999 revisions of the naturalization
application, form N-400, INS included a question about needed accommodations.
INS hopes that by standardizing the accommodations request procedure,
and getting more advance notice of the need for accommodations,
it will be better able to respond to the needs of applicants with
disabilities.
b) Fingerprinting requirements
In April of 1997, Tal Klement, a law student at Yale
University, filed his United States citizenship application with
the INS district office in San Francisco. Although INS publishes
that its policy is to "strive to maintain an average time of approximately
six months for the entire naturalization process,"82
in June of 1998, Klement was still no closer to becoming a citizen
than when he filed his application 15 months before.83
On September 22, 1997, Mr. Klement received a form letter from INS
stating that his fingerprints were "unclassifiable," and therefore
he had to submit new ones.84 Klement
was born with shortened arms, three fingers on his right hand and
two on his left, which made his first set of prints "unclassifiable"
because it was not a full set of 10 fingers. At the time, INS required
that all citizenship applicants submit their fingerprints to establish
the applicant's identity for criminal background checks.85
INS policy has been that every applicant whose prints are rejected
must return for a second printing before INS will ask the FBI to
run a name check.86 However, in
response to difficulties of some applicants in providing even a
single legible fingerprint, in the spring of 1999 INS announced
a waiver procedure that exempts this group of applicants from having
to return to be printed again, based on a waiver given by the INS
employee in charge of the fingerprinting operation. Instead, such
applicants can immediately satisfy the background check requirement
by submitting local police clearance.
Equipped with medical certification of his disability
and police verification of his clean record, Mr. Klement returned
to submit a new set of prints, only to receive another form letter
from INS advising him that his fingerprint card was rejected because
the FBI could not "classify" or "read" his prints.87
No further explanation was given, and there was no mention of his
disability anywhere in the letter. Despite three letters from his
congressional representative, and repeated requests for a modification
of INS fingerprint policy, over the next few months INS continued
to require that Mr. Klement submit additional prints. It was only
after DREDF intervened and filed a Section 504 complaint on behalf
of Mr. Klement that INS finally agreed to accept his police clearances
and expedite his citizenship application.
When questioned about Mr. Klement's situation, an
INS spokesperson was quoted in The Washington Post as saying,
"The whole system is designed to rely on the fact that 99.999 percent
of the world has fingerprints that work. Anything that falls outside
that is much harder to deal with."88
From Mr. Klement's viewpoint, it was not his fingerprints that were
the problem, but rather the intransigence of an agency that refused
to modify its policies in order to accommodate citizenship applicants
with disabilities.
Ravinder K of India agreed with this sentiment, as
she too is one of the .001 percent of the world whose fingerprints
do not seem to "work." Ravinder K has cerebral palsy, and as a result
she is unable to open her right hand wide enough to make a readable
print. Like Mr. Klement, Ms. K submitted two sets of fingerprints,
both of which were rejected by INS. According to the Section 504
complaint filed by DREDF on behalf of Mr. Klement and Ms. K, "For
months, Ms. K has been requesting an accommodation or modification
of INS policy to allow her to undergo an alternative security clearance
or criminal background check through some means that does not involve
taking prints."89 At the time of
the NCD hearing in San Francisco, however, Ms. K still had received
no response from INS acknowledging her accommodation requests. As
in Mr. Klement's situation, INS continued to demand that she submit
additional prints. It was apparent that Ms. K would encounter the
same difficulties in producing a readable print no matter how many
times she was fingerprinted. In spite of this, INS ignored her request
for a reasonable accommodation and policy modification, thereby
delaying the processing of her citizenship application.
Until the new policy took effect, INS's policy was
that all applicants must receive two ratings of their prints as
"unclassifiable" by the FBI before they were allowed to submit clearance
from local police jurisdictions. However, two issues have caused
many applicants to have to submit prints more than two times. First,
INS's fingerprint program was modified drastically in the fall of
1997, when Congress mandated that INS begin in-house fingerprinting
programs. Because many prints taken under the previous program were
unclassifiable, many applicants who had submitted prints taken by
non-INS entities were required to appear again to be fingerprinted
at an INS location because INS could no longer accept prints by
any other outside entity. Most of these transition difficulties
should be resolved by now. In addition, INS only accepts the results
of FBI fingerprints checks for 15 months; after that point the applicant
must have another check completed. Unfortunately, an unprecedented
number of naturalization applications have had to submit prints
again, often multiple times, even if their first fingerprints were
readable by the FBI.
It is to be hoped that the new INS waiver policy will
eliminate these problems for applicants in the future.
c) Oath of allegiance
To become United States citizens, all naturalization
applicants must take an oath of allegiance, swearing to "support
the Constitution and obey the laws of the United States." An applicant's
success ultimately hinges on whether he or she is able to demonstrate
an ability to take a meaningful oath of allegiance. To become citizens,
applicants must convince INS that they are cognitively aware of
the oath, their situations, and the actions they are taking."90
These requirements prompt the following questions: What constitutes
a "meaningful" oath of allegiance? What happens when applicants
cannot demonstrate that they are "cognitively aware of the oath,
their situations, and the actions they are taking" because they
have a significant cognitive impairment, such as a significant developmental
or psychiatric disability?
Unfortunately for Mr. W, a citizenship applicant with
a significant developmental disability, the answer to the former
question was never given, and the answer to the latter question
was a denial of his naturalization application. On November 9, 1997,
Mr. W received a letter from INS informing him that his application
for naturalization had been denied because he "does not possess
the capability of understanding the requirements and responsibilities
of citizenship as stated in the oath of allegiance in any other
language or through other communicative means."91
This decision was primarily based on Mr. W's July 19, 1996, naturalization
interview, during which the District Adjudications Officer asked
Mr. W's father whether his son understood the oath of allegiance.
According to correspondence between Stephen Rosenbaum and INS, Mr.
W's father answered that he did not know if his son understood the
oath, but he was confident that his son would understand it if his
father were able to explain it to him.92
This request for a policy modification of the INS oath requirement
was denied, and Mr. W's naturalization application was turned down
because he was unable to demonstrate his ability to take a "meaningful"
oath of allegiance.
According to a Section 504 complaint filed by DREDF
on behalf of another applicant with a developmental disability who
was also found by INS to be "incapable" of understanding the oath
of allegiance, INS's 1997 supplemental policy guidance for disability
naturalization adjudications provides that "offices should be creative
in constructing additional accommodations and modifications" and
adjudication officers "cannot expect that interviews with many persons
with disabilities will proceed or be conducted in the same way as
applicants without disabilities."93
Despite this policy, applicants with significant developmental disabilities
are being held to the same standard set for applicants without disabilities
as far as the oath of allegiance is concerned. They are required
to demonstrate in an interview, with no accommodations or modifications,
their capacity to understand and execute a "meaningful" oath of
allegiance, even though the very nature of their disability may
prevent them from doing so without some level of accommodation.
Furthermore, as NCD noted in its 1997 position paper, this issue
is complicated by the fact that "naturalization examiners are not
trained to evaluate a disabled applicant's ability to comprehend
what is taking place."94
The effect of denying applicants with disabilities
their right to an accommodation or modification of the oath requirement
is to systemically screen out applicants with developmental and
psychiatric disabilities "solely by reason of [their] handicap,"
in violation of Section 504 of the Rehabilitation Act of 1973.
As Stephen Rosenbaum noted in his oral testimony before
the members of NCD,
Unfortunately, for the people who get through the
tests of literacy and civics, and get through the interview process,
at the end of it all if they don't know what the oath of allegiance
is or what it means, they fail the test. For a lot of people with
severe mental retardation, in particular, whose lives remain here
with their families (they will not be leaving the country and
are not a threat to national security), these people are denied
citizenship at the end of the day and are essentially rendered
"stateless."
For citizenship applicants with disabilities, INS
has continued to enforce the requirements that all applicants have
the "capacity to take a 'meaningful' oath of allegiance." Congress
did not address the oath requirement when it enacted exceptions
from the English and U.S. history and government tests for applicants
with certain disabilities. As a result, INS officers are unable
to make accommodations pertaining to the applicants' understanding
of the oath.
However, INS has instructed its officers to make accommodations
in the way they communicate with applicants with disabilities, such
as relying on blinks as a signal for understanding, if that is the
applicant's usual method of communication.
Recommendations
Based on the testimony provided by Stephen Rosenbaum
on behalf of the 10 citizenship applicants noted above, it is evident
that the historical practice of discouraging and actively restricting
the immigration and citizenship of people with disabilities still
occurs on a regular basis. Although laws are no longer passed that
specifically bar the immigration of people who have epilepsy and
other disabilities, the pattern of discrimination against potential
citizens with disabilities has continued through the denial of reasonable
accommodations and policy modifications throughout the naturalization
process.
In May of 1997, INS developed an "action plan" to
address the systemic problems within the naturalization program,
and to ensure that "naturalization quality procedures" were in place.
Based on the evidence presented at the 1998 NCD hearing, it appears
that INS district offices are receiving little policy guidance from
INS headquarters on how to process reasonable accommodation requests
from applicants with disabilities. Lacking definition and guidance,
INS district offices have dealt with this situation by either placing
these requests on hold until they receive some direction from Washington,
or ignoring the requests and expecting applicants with disabilities
to proceed through the naturalization process without accommodations.
Either way, the result is delays in processing of their applications
by as long as two to three years, or sometimes even indefinitely.
During this period, applicants with disabilities and their families
are in limbo. Their naturalization applications are neither granted
nor denied. Thus they are precluded from filing any kind of appeal
because the only formal grievance procedure available, according
to Stephen Rosenbaum, is an appeal of a denial of naturalization,
not a denial of accommodation. Based on the cases described in this
report, it appears that there is no formal grievance procedure in
place, either to appeal a denial of accommodation or to report a
failure on the part of INS to reply to accommodation requests. If
an ADA/504 Compliance Office exists, the applicants described in
this report were not made aware of it. None of the applicants were
given the opportunity to fill out an accommodation request form
when they submitted their naturalization applications. In the absence
of any kind of formal accommodation request procedure (apart from
the disability waiver application), they simply wrote letters or
called to request the accommodations and submitted their medical
documentation separately. Every time they called INS to inquire
about the status of their accommodation requests, however, their
inquiries were left unacknowledged.
For these reasons, NCD recommends that the following
actions be taken:
- Congress should ask GAO to conduct a study of INS
compliance with disability access mandates under federal law,
examining in part whether the changes put in place in the past
year have resolved the long-standing problems identified in this
report.
- INS should conduct training for field staff regarding
the new procedures and policies outlined in its April 7, 1999,
memorandum, and training should be completed by October 1, 1999.
- Congress should amend the Immigration and Nationality
Act to provide for a disability waiver for the oath of allegiance
requirement.
- INS should ensure timely processing of naturalization
applications for applicants with disabilities.
- The Disability Rights sections of the Civil Rights
Divisions of DOJ, NCD, and INS should work together to monitor
implementation of INS's recent efforts to address long-standing
problems with its naturalization process regarding access for
applicants with disabilities and to address ongoing problems as
they occur. To further this effort, the DOJ should institute a
toll-free number, to a central location staffed with trained multilingual
employees, where anyone encountering problems with accommodations
during the naturalization process could raise those issues and
the staff would track the nature of the problem and take steps
to address both the individual and systemic issues identified.
The toll-free number should be publicized in numerous languages
in every INS office and published on all INS forms and materials.
- Individuals with significant developmental and
psychiatric disabilities should not be prohibited from becoming
citizens for the sole reason that they cannot demonstrate the
capacity to take a "meaningful" oath of allegiance.95
In testimony at the 1998 NCD hearing, Eva Casas-Sarmiento,
statewide outreach coordinator for Protection & Advocacy, Inc.,
asked the members of NCD to "make sure that people with disabilities
who apply to become citizens are not placed at the bottom of the
list. Right now, they are at the bottom of the list, and they're
having to wait longer than other people to become citizens." In
order to prevent the unnecessary delays described previously, NCD
recommends that INS implement procedures to ensure that naturalization
applications by people with disabilities are processed as efficiently
as others.
E. BARRIERS TO ACCURATE DEMOGRAPHIC
DATA 1. Overview
This chapter discusses demographic data about minorities
with disabilities and describes some problems in the statistics
used to describe some cultural groups. Flawed data, though unintentionally
circulated, may have an adverse effect especially on people with
disabilities of Hispanic, Asian, or Pacific Islander descent.
The National Council on Disability recommends that
the U.S. Bureau of the Census take steps to improve the tracking
of data about minorities with disabilities. The approaching Census
2000 collection is a good place to start. It could include measures
such as targeted recruitment of minority individuals with disabilities
in the hiring process for temporary census workers.
Because mistaken statistics may have led to the underserving
of Hispanics, Asians, and Pacific Islanders with disabilities, NCD
recommends that federal disability programs conduct self-evaluations
to ensure that this is not occurring. NCD also recommends that the
National Institute on Disability and Rehabilitation Research (NIDRR)
sponsor additional studies to improve demographic data about minority
subcultures and intra-group differences.
2. Analysis
Throughout California's history, the population of
the state has been characterized by its ethnic and cultural diversity.
Even in the state's early history, more than 300 distinct tribes
and language groups occupied the state.96
Today, 150 years into statehood, California has a population that
encompasses virtually every race, ethnic heritage, religion, and
language group on the planet. The population of California is, indeed,
among the most diverse and complex populations anywhere in the world,
and no other developed region the size of California has sustained
such rapid and tremendous population growth.97
In 1997 alone, California's population grew by 582,000 people, to
a total of 33,252,000.98 While
this population growth is remarkable in itself, what makes California's
population increase especially remarkable is the nature and composition
of that growth.
As recently as 1970, almost 80 percent of the state's
residents were White.99 Over the
next three decades, however, California's population has undergone
a tremendous shift in its racial and ethnic distribution. Between
1980 and 1990, Hispanic population changes accounted for 51.7 percent
of the state's total population increase, and Asian/Pacific Islander
population changes accounted for 24.1 percent of that increase.100
Census data for 1990 showed that only 57 percent of the state's
residents were White; 26 percent were Hispanic; 9 percent were Asians
and Pacific Islanders; 7 percent were African Americans; and 1 percent
were Native Americans. Since 1990, Hispanic and Asian/Pacific Islander
population changes have provided 91 percent of the state's total
population increase.101 The White
population, as a proportion of the state's total population, declined
to 53 percent in 1996. The Hispanic population rose to 29 percent,
and the Asian/Pacific Islander population increased to 11 percent.
The percentage of African American and Native American populations
in California remained at 7 percent and 1 percent, respectively.102
Based on these trends, it is clear that around the
turn of the century California will be the first of the 48 contiguous
states with a majority population made up of racial and ethnic minorities.
The political, economic, and social ramifications of this shift
are major, particularly as they pertain to the prevalence of disability
in the state among racial and ethnic minorities, and the corresponding
inequality of service delivery that this rate of disability entails.
In the 1992 amendments to the Rehabilitation Act of
1973, Congress added a new section that called for the establishment
of a Rehabilitation Cultural Diversity Initiative (RCDI) aimed at
improving service delivery for minority individuals with disabilities
in the state-federal vocational rehabilitation program. Among its
primary justifications for adding Section 21 were Congress's agreement
with findings that (1) "Ethnic and racial minorities tend to have
disabling conditions at a disproportionately high rate" and (2)
"Patterns of inequitable treatment of minorities have been documented
in all major junctures of the vocational and rehabilitation process."103
The finding that people from diverse cultural populations experience
disabling conditions at a disproportionately higher rate is a well-established
fact for certain racial and ethnic groups, particularly Native Americans
and African Americans.104-106
Several studies have found that Native Americans have the highest
rate of disability of any racial or ethnic group in the United States,
and African Americans have the second highest rate of disability
and the highest rate of significant disability.107
A study conducted by the University of California at San Francisco's
Disability Statistics Rehabilitation Research and Training Center,
based on data collected by the Census Bureau in 1991 and 1992 in
its Survey of Income and Program Participation, found that the rate
of disability in the U.S. population is 21.9 percent for Native
Americans, followed closely by 20.0 percent for African Americans
and 19.7 percent for Whites. For people of Hispanic origin, however,
the study found that the disability rate (15.3%) was "significantly
lower," and the rate for Asians and Pacific Islanders (9.9%) was
"only half that for Whites and Blacks." Upon initial examination
of these data, it appears that Hispanics and Asians/Pacific Islanders
do not fit the disability profile provided in the Congressional
findings noted above; they have a lower rate of disability than
any other racial and ethnic group in the United States, including
Whites.
A closer examination of the data, however, raises
sharp questions about making such generalizations and relying on
the national census figures to determine the prevalence of disability
within minority populations in the United States. This practice
can lead to generalizations about Hispanic and Asian/Pacific Islander
populations that mask the intra-ethnic diversity that exists within
and among these groups. The testimony of Nancy Lim-Yee, a health
worker at the Chinatown Child Development Center in San Francisco,
supports this finding:
The categories of "Asian," "Pacific Islander,"
and "Filipino" contain a great deal of cultural diversity, and
differ as well in migration history prior to arrival in the United
States, experience of wars, displacement, and other traumatic
experiences. The Asian/Pacific Islanders include many subgroups
and cultures and cannot be lumped together.
In fact, the "Asian and Pacific Islander" classification
itself is made up of more than 40 distinct ethnic groups separated
by differences in history, language, customs, values, and religion.108
Lumping all of these groups into an aggregate category, the monolithic
"Asian and Pacific Islander," masks significant differences, including
differences related to immigration status and how long an individual
has been in the United States, both of which can have a direct impact
on the self-reported rate of disability in a census survey.
Within the past century, the majority of immigrants
to the United States have come from Latin America and Asia. From
1990 to 1996 alone, 188,000 Hispanics and 452,000 Asians and Pacific
Islanders immigrated to California.109
Whether or not these immigrants would self-identify, and hence self-report
in a census survey as having a disability, largely depends upon
several acculturation variables, including immigration status (i.e.,
documented or undocumented), differences in racial classifications,
and the amount of time an immigrant has spent in the United States.
Undocumented immigrants are less likely to identify themselves as
disabled (and in need of public services) because of the reporting
requirements that exist at both the federal and state levels. Under
California's Proposition 187 and the federal welfare reform law,
certain federal and state agencies are required to report any persons
suspected of being in the country unlawfully to the Immigration
and Naturalization Service.
Another factor that may affect the self-reported rate
of disability, particularly within Hispanic populations, is the
method of racial classification used by the Census Bureau. Cheryl
Utley and Festus Obiakor contend that although the classification
scheme developed by the U.S. Census Bureau is the most commonly
used method for identifying racial and ethnic groups in the United
States, it is also the most problematic.110
Enwisle and Astone have summarized some of the critical problems
associated with the Census Bureau's racial classification scheme.
To begin with, "race and ethnicity are confounded when respondents
fall under more than one category (i.e., Hispanic, Latino, and Puerto
Rican). The amount of information gathered on the ethnicity of a
particular group varies among groups (i.e., there is an abundance
of information gathered on Pacific Islanders, while little is collected
for Haitians)." And finally, "individuals may prefer to be acknowledged
by categories different from those offered (i.e., Black rather than
African American)."111 Anita Leal-Idrogo
also noted that "almost 90 percent of the Hispanic population is
typically categorized as White in racial classifications."112
If immigrants from Latin America and Asia are closely
aligned with the attitudes and culture of their country of origin,
they may not self-identify on a census survey as being disabled
because of the negative perceptions and attitudes about disability
that exist within these cultures. Ethnicity is often directly related
to attitudes about disability. Asians have been found to have the
least favorable attitudes about disability of any ethnic minority
group.113 Paul Leung points out
that the Chinese character for disability, in fact, implies that
a person is "useless or crippled." He says there is a widespread
perception within Asian cultures that disability exists because
of what one did in a previous life, and it brings about shame to
the entire family.114 This attitude
and perception of disability as being a punishment or a shameful
experience is documented within several of the testimonies at the
1998 NCD hearing in San Francisco. Throughout the hearing, Hispanic
and Asian/Pacific Islander witnesses repeatedly used such words
as "shame," "guilt," "inconvenience," and "burden" when referring
to their disability or the disability of a family member. These
multiple factors (immigration status, differences in racial classification,
and cultural attitudes about disability) can have a direct impact
on the self-reported rate of disability within Hispanic and Asian/Pacific
Islander populations in the United States.
For these reasons, Leung argues that the current national
estimates probably do not accurately reflect the reality of the
prevalence of disability among Asians and Pacific Islanders.115
Recent studies on the prevalence of disability among racial and
ethnic minorities suggest that there is a direct link between the
rate of disability in minority communities and various socioeconomic
factors, such as income, poverty, and occupation.116
Drawing on this data, Leung concludes that some Asian and Pacific
Islander ethnic groups "may have a higher rate of disability than
the majority population" because of their "higher rates of poverty
and representation in service occupations."117
This argument can be applied to certain segments of
the Hispanic population as well. According to a 1998 report by the
U.S. Census Bureau, the poverty rate for Hispanics (27.1 %) is one
of the highest in the nation.118
The level of financial deprivation among Hispanics with disabilities
is even greater. A 1996 article by Anna Santiago, Francisco Villarruel,
and Michael Leahy reported that three out of four Latinos with disabilities
had less than a high school education, and nearly 60 percent had
annual earnings less than $4,000.119
"Relatively few Latinos with disabilities (17 percent of Latina
women and 42 percent of Latino men) participate in the labor force,"
they wrote, "and for those disabled Latinos who do enter the labor
force, the chances of being unemployed are high: 22 percent of Latina
women and 24 percent of Latino men." The authors argued that the
rate of disability among Latinos was probably higher than expected,
particularly given the "sustained levels of growth within the Latino
population and greater exposure to health and occupation risks."
When the national data are disaggregated and a specific study is
conducted on the prevalence of disability among ethnic and racial
minorities in California, Leung, Santiago, Villarruel, and Leahy
appear to be correct. The current national estimates do not seem
to accurately reflect the prevalence of disability among Hispanics
and Asians/Pacific Islanders in California, and these populations
do, in fact, have a higher rate of mobility and self-care limitations
than the majority population in the state.
According to a recent U.S. Census Bureau report, 20.6
percent of the general population has some type of disability.120
In California, with approximately 33 million residents, this means
that at least 6 million people deal with disability issues on a
day-to-day basis, a conservative estimate at best.121
When this figure is broken down by race and ethnicity, the prevalence
of disability among racial and ethnic minorities in the state appears
to mirror the national data. The 1990 federal census of population,
social, and economic characteristics of California, issued in September
of 1993, showed that Native Americans had the highest rate of work
disability in California (14.74%), followed by African Americans
(11.74%) and Whites (7.64%).122
The rate among Hispanics was 5.75 percent and among Asians/Pacific
Islanders, 4.78 percent.123 Although
these figures seem to support the "Hispanic and Asian/Pacific Islander
exception," they diverge from the national estimates in a significant
respect. Hispanics and Asians/Pacific Islanders in California have
a higher rate of mobility and self-care limitations than the majority
population. As reflected in the national estimates, Native Americans
have the highest rate of mobility limitations in California (3.98%),
followed closely by African Americans (3.87%). Unlike the national
estimates, however, Asians/Pacific Islanders have the third highest
rate of mobility limitations in California (2.42%), followed by
Hispanics (2.18%). Whites, in contrast, have the lowest rate of
mobility limitations of any racial or ethnic group in the state
(1.89%). A similar pattern appears in the prevalence of self-care
limitations in California. African Americans have the highest rate
(7.10%), followed by Asians/Pacific Islanders (5.94%), Hispanics
(5.22%), and Native Americans (4.58%). Whites have the lowest rate
of self-care limitations of any racial or ethnic group in the state
(2.87%).124 Based on the cultural
variables and figures noted above, there is strong reason to believe
that the national estimates do not accurately reflect the rate of
disability among Hispanics and Asians/Pacific Islanders.
Unfortunately, because of the widespread publication
of these national figures, the service delivery system in California
has tended to focus on the needs of Whites, African Americans, and
Native Americans with disabilities, and to direct little attention
to serving the needs of Hispanics and Asians/Pacific Islanders with
disabilities.125 This oversight
appears to have substantially reduced the effectiveness of service
delivery for Hispanics and Asians/Pacific Islanders with disabilities
in California. According to the 1997 annual performance report for
the California state independent living services program, "Data
on the ethnicity of persons served by CILs over the past three years
indicate that Black/African American individuals are being well
served by nearly all centers in comparison to their incidence in
the centers service area population." In contrast, only two or three
centers serve Hispanic individuals in numbers reflective of their
communities, and no center serves persons of Asian heritage in numbers
reflective of the general population.126
This pattern of inequitable service delivery for Hispanics and Asians/Pacific
Islanders with disabilities is also documented in the testimonies
at the 1998 NCD hearing in San Francisco. In her videotaped testimony,
Lourdes Mugas Talan, an independent living specialist at the Hawaii
Centers for Independent Living, noted the following:
Another issue that concerns me is when working
with the immigrant population, especially people of my own ethnicity,
social services are not really ready to accept them and to be
able to provide services.
Of the 69 people who testified at the hearing, almost
half (47.8%) were individuals from Asian and Pacific Islander cultures.
People of Hispanic origin constituted 17.4 percent of the witnesses,
and only 10.1 percent were African American. Whites comprised 20.3
percent of the witnesses, and fewer than 1 percent were Native American.
The fact that more than 65 percent of the respondents
at the hearing were Hispanic or Asian/Pacific Islander suggests
the sense of isolation and frustration existing within these communities,
in part because of the unequal treatment they experience in the
service delivery system in California. In honest and eloquent testimony,
Ramona Chacon, a parent of a young man with a disability, expressed
her feelings:
At one point my sister told me, "You know, you
always seem like you're fighting, because every time you talk,
you can't talk without arguing." And then I realized that you
have to fight the school district, and sometimes have problems
with your landlord, and you have to fight the regional center
who is supposed to be helping you....All these systems that are
supposed to be helping you...it's very, very hard emotionally
and mentally to always constantly fight and always threaten to
file a lawsuit....Within each school district they should have
some way where parents can go to an IEP meeting for their child
with another parent or with an advocate....We need to be able
to reach the families because when you have a child with so many
different needs, you feel so isolated at times.
Recommendations
The testimony and evidence reviewed in this chapter
indicates that Hispanics and Asians/Pacific Islanders not only experience
disability at a higher rate than reported in the national estimates,
they also experience inequalities in service delivery as a result
of this statistical inaccuracy, which can often lead to feelings
of frustration and isolation. The California experience, moreover,
raises questions about nationwide demographics of disability in
the Hispanic and Asian/Pacific Islander communities. NCD recommends:
- The U.S. Bureau of the Census and the Bureau of
Labor Statistics, working with the National Institute on Disability
and Rehabilitation Research and the National Center for Health
Statistics, should develop alternative methods for tracking the
prevalence of disability within racial/ethnic minority communities
nationally and at the state, local, and tribal government levels.
In order to obtain a more accurate count of people
living in poor minority and immigrant neighborhoods, Representative
Dan Miller (R-Fla.), head of the House panel that oversees the census,
and Representative Carrie Meeks (D-Fla.) introduced legislation
to encourage the hiring of minority individuals as census takers.
They said "current research shows that accuracy is increased when
members of those communities help in counting."127
Whether by legislation or other policy means, NCD recommends that
the Census Bureau do targeted recruitment of qualified minorities
with disabilities as it hires workers for census taking.
NCD recommends:
- The Census Bureau should make affirmative action
efforts to hire minority and bilingual individuals with disabilities
as part of the workforce that will assist with Census 2000.
For a variety of historical reasons, individuals from
minority communities may be reluctant to participate in governmental
surveys because of a fear of intrusion. When coupled with the negative
perceptions of disability that exist within many minority communities,
this leads to a decreased willingness on the part of minority individuals
with disabilities to participate in census surveys and identify
themselves as having a disability.
Given these cultural factors, NCD recommends that
the Census Bureau use local minority media and community resources
as a means of communicating better the purposes and uses of census
data related to disability. All communication should be available
in multiple languages, and should be disseminated through nontraditional
means, (e.g., placing inserts in utility bills, paychecks, grocery
store bags; publishing information on the World Wide Web; posting
flyers in areas frequented by minority individuals with disabilities).
In order to address the inequities that exist in service
delivery for Hispanics and Asians/Pacific Islanders with disabilities,
NCD recommends that federal disability programs conduct a review
of their clientele to determine the effectiveness of service delivery
for these populations.
Because of the widespread tendency to lump many distinct
ethnic groups into a few broad categories (Native Americans, African
Americans, Hispanics, and Asians/Pacific Islanders), and to make
generalizations based on this categorization, significant cultural
differences have been masked, which has had a direct impact on the
effectiveness of service delivery for minority individuals with
disabilities and their families. NCD recommends:
- NIDRR should fund nationwide studies that will
explore the prevalence and experience of disability within different
ethnic groups in a particular cultural community.
Research should be supported that studies in-group
variability based on quantifiable data, and processes should be
in place to control for the confounding of such variables as location
(e.g., urban, rural, or suburban), acculturation, language, and
socioeconomic level.128 Researchers
and disability service agencies should not assume that the experience
of a Mexican individual with a disability will mirror that of a
Puerto Rican individual with a disability, or that the experience
of an immigrant with a disability will directly coincide with that
of a nonimmigrant with a disability.
IV.
CONCLUSION More than two centuries ago,
a promise was made to the American people in the Declaration of
Independence--a promise that "all men are created equal" and "are
endowed by their Creator with certain unalienable Rights," including
the right to "Life, Liberty and the pursuit of Happiness."129
Less than a century later, in 1863, President Abraham Lincoln reminded
America of this promise of freedom and equality in his address at
Gettysburg, Pennsylvania, and vowed to fight until that promise
was fulfilled for all of the nation's people, regardless of race:
"Four score and seven years ago our fathers brought forth on this
continent, a new nation, conceived in Liberty, and dedicated to
the proposition that all men are created equal."130
On January 1, 1863, President Lincoln officially renewed this promise
by signing the Emancipation Proclamation, and in 1865, it was added
to the Bill of Rights when Congress approved the Thirteenth Amendment
to the Constitution, which outlawed slavery in the United States.
In spite of this renewed promise, exactly one century
later, on August 28, 1963, in his famous address at the Lincoln
Memorial, the Reverend Martin Luther King, Jr., reminded America
once again of the promise of freedom and equality, and noted that
it had yet to be fulfilled for the nation's citizens of color: "Five
score years ago, a great American, in whose symbolic shadow we stand,
signed the Emancipation Proclamation.... But one hundred years later,
we must face the tragic fact that the Negro is still not free."131
Spurred on by King's powerful reminder, one year later
America once again renewed the promise of freedom and equality with
the passage of the Civil Rights Act of 1964. This Act went a long
way toward fulfilling the promise of freedom and equality for some
segments of the American population. For one segment, however, people
with disabilities, the promise had yet to be fulfilled.
Less than 30 years later, on July 26, 1990, President
George Bush officially extended the promise of freedom and equality
to the nation's citizens with disabilities when he signed into law
the Americans with Disabilities Act. At the signing ceremony for
the Act, Bush declared:
Three weeks ago we celebrated our nation's Independence
Day. Today, we're here to rejoice in and celebrate another "Independence
Day," one that is long overdue....Our success with this Act proves
that we are keeping faith with the spirit of our courageous forefathers
who wrote in the Declaration of Independence: "We hold these truths
to be self-evident, that all men are created equal, that they
are endowed by their Creator with certain unalienable rights."
These words have been our guide for more than two centuries as
we've labored to form our more perfect union. But tragically,
for too many Americans, the blessings of liberty have been limited
or even denied. The Civil Rights Act of '64 took a bold step toward
righting that wrong. But the stark fact remained that people with
disabilities were still victims of segregation and discrimination,
and this was intolerable. Today's legislation brings us closer
to that day when no Americans will ever again be deprived of their
basic guarantee of life, liberty, and the pursuit of happiness.
After he made this majestic declaration of freedom
and equality, Bush turned to the four White activists with disabilities
near him and proclaimed, "Let the shameful wall of exclusion finally
come tumbling down." Noticeably absent from this picture were any
minority individuals with disabilities. For these individuals, the
history of unfulfilled promises would remain a continuing legacy.
The shameful wall of exclusion was, indeed, still a prevalent reality
for America's disabled citizens of color.
In an attempt to tear down this wall of exclusion
and fulfill the promise of freedom and equality for all of the nation's
citizens with disabilities, the National Council on Disability created
an "agenda for the future" in 1992 that identified the unmet needs
of minority group members with disabilities as a national policy
priority. In spite of this agenda for the future, as the 10th anniversary
of ADA approaches, minority individuals with disabilities and their
families are hardly closer to realizing the promise of freedom and
equality than they were six years ago. The barriers to necessary
resources and culturally competent service delivery that existed
in 1992 continue to exist today.
In order to "tear down this wall" of exclusion once
and for all, people with disabilities and their families from diverse
cultural communities came forward at the 1998 NCD hearing in San
Francisco to insist that the "agenda for the future" be transformed
into an immediate "course of action for today." In his testimony,
Vernon Phillips, a freelance writer and musician who is blind, stated
that it is time to "make some changes and deal with people's realistic
circumstances, and not just what looks and sounds good." "I hope
today can be the start," he said, "the start for better things."
In answer to this call for action, NCD has charted out a "course
of action for today," a declaration of interdependence for minority
individuals with disabilities and their families, which if implemented
will represent substantial progress toward the promise of freedom
and equality for minority individuals with disabilities and their
families.
V.
NOTES
1 President George Bush, "ADA: A Special
Issue." Worklife, no. 3 (Fall 1990), p. 11.
2 Tennyson J. Wright
and Paul Leung, Meeting the Unique Needs of Minorities with Disabilities:
A Report to the President and the Congress. National Council
on Disability, Washington, DC, 1993, p. 16.
3 Jonathan M. Young,
"Equality of Opportunity: The Making of the Americans with Disabilities
Act." National Council on Disability, Washington, DC, 1997, p. 179.
4 Sylvia Walker et al.
"An Examination of the Impact of Federally Supported Community Services
and Educational Systems on Underserved People with Disabilities
from Diverse Cultural Populations." Howard University Research and
Training Center for Access to Rehabilitation and Economic Opportunity,
Washington, DC, 1996, p. 12.
5 Young, 1997.
6 Office of Planning
and Resource Development, California Department of Rehabilitation,
"The Rehab Act of 1992: A Compilation of the Rehabilitation Act
of 1973 as Amended by the Rehabilitation Act Amendments of 1992,
Public Law 102-569." Rehabilitation Services Administration, Sacramento,
CA, 1993, Sec. 21(a)(2).
7 California Department
of Rehabilitation, "Department of Rehabilitation Action Plan to
Provide Racially Equitable Vocational Rehabilitation Services."
California Department of Rehabilitation, Sacramento, CA, 1995, p.
2.
8 California Department
of Rehabilitation Statistics Unit, "Statewide Summary, Distribution
of Consumers by Race and Status, Fiscal Year 1996/7, and Fiscal
Year 1997/8." California Department of Rehabilitation, Sacramento,
CA, 1998.
9 California Department
of Rehabilitation Statistics Unit, "District Level Summary, Distribution
of Consumers by Race and Status, Fiscal Year 1997/8." California
Department of Rehabilitation, Sacramento, CA, 1998.
10 California Department
of Rehabilitation Statistics Unit, "Statewide Summary, Reasons for
Closure in Status 28, Reasons for Closure by Race and Fiscal Year,
Fiscal Year 1996/7, and Fiscal Year 1997/8." California Department
of Rehabilitation, Sacramento, CA, 1998.
11 California Department
of Rehabilitation Statistics Unit, "Statewide Summary, Training
and Placement Services Received by Consumers in Status 26, Fiscal
Year 1997/8." California Department of Rehabilitation, Sacramento,
CA, 1998.
12 Jen Sermoneta, "Minutes
of the 7/28 Meeting of the Youth Project for Inclusion of Minority,
Low-Income and Disabled Youth." Center for Independent Living, Oakland,
CA, July 28, 1998, p. 1.
13 The Americans with
Disabilities Act of 1990 (42 USC 12101 et seq.). 101st Congress,
2nd session, Washington, DC, 1990).
14 Sermoneta, 1998.
15 U.S. Department of
Justice, "The Americans with Disabilities Act Title III Technical
Assistance Manual Covering Public Accommodations and Commercial
Facilities." Edited by Public Access Section, Civil Rights Division,
U.S. Department of Justice, Washington, DC, November 1993.
16 Equal Employment
Opportunity Commission and U.S. Department of Justice, Americans
with Disabilities Act Handbook. BNI Publications, Inc., Los
Angeles, CA, 1991.
17 Elizabeth B. Bazan,
Congressional Research Service Report for Congress: The Possible
Applicability of the Americans with Disabilities Act to Indian Tribes.
Library of Congress, American Law Division, Washington, DC, June
11, 1991.
18 American Indian Disability
Legislation Project, "American Indian Approaches to Disability Policy,
Establishing Legal Protections for Tribal Members with Disabilities:
Five Case Studies." University of Montana, Research and Training
Center on Rural Rehabilitation, Rural Institute on Disabilities,
Missoula, MT.
19 Walker et al., 1996.
20 Developmental Disabilities
Assistance and Bill of Rights Act Amendments of 1994 (42 USC 6001).
103rd Congress, Washington, DC, 1994.
21 Office of the Legislative
Analyst, 1994 California Voter Information: Analysis of Proposition
187 by the Legislative Analyst. Available from http://ca94.election.digital.com/e/prop/187/analysis.html
(cited 1998).
22 Office of the Legislative
Analyst, Analysis of Proposition 209 by the Legislative Analyst.
Available from http://www.ss.ca.gov/Vote96/html/BP/209analysis.htm
(cited 1998).
23 Richard B. Rice,
William A. Bullough, and Richard J. Orsi, The Elusive Eden: A
New History of California, 1st edition. McGraw-Hill, New York,
1988.
24 Office of the Legislative
Analyst, Proposition 227: Analysis by the Legislative Analyst.
Available from http://primary98.ss.ca.gov/VoterGuide/Propositions/227analysis.htm
(cited 1998).
25 Kevin Starr, California--The
Dream & The Challenge. Available from http://www.ca.gov/s/history/cahdream.html,
California home page, 1995 (cited October 12, 1998).
26 Robert R. Davila,
"Goals for Improving Services to Minority Individuals with Disabilities."
OSERS News In Print: Disability And People From Minority Backgrounds,
vol. 3, No. 4 (Spring 1991), p. 4.
27 California Department
of Rehabilitation and State Independent Living Council, "The Annual
Performance Report for the State Independent Living Services Program,
Centers for Independent Living Program, Part 1." Sacramento, CA,
1997, p. I-4.
28 California Department
of Rehabilitation and State Independent Living Council, 1997.
29 Federal Glass Ceiling
Commission, "A Solid Investment: Making Full Use of the Nation's
Human Capital." U.S. Government Printing Office, Washington, DC,
November 1995.
30 Federal Glass Ceiling
Commission, 1995.
31 Rehabilitation Services
Administration Commissioner Fredric K. Schroeder, "RSA's Capacity
Building Project." American Rehabilitation, vol. 22, no.
1, Spring 1996, p. 1.
32 Walker et al., 1996.
33 Virginia Thompson,
"Independent and Interdependent Views of Self: Implications for
Culturally Sensitive Vocational Rehabilitation Services." Journal
of Rehabilitation, vol. 63, no. 4, October/November/December 1997),
pp. 16-20.
34 Fred R. McFarlane
et al., "Embracing Diversity in Rehabilitation Within Pacific Cultures."
American Rehabilitation, vol. 22, no. 2 (Summer 1996), pp.
20-28.
35 Paul Leung, "Asian
Pacific Americans and Section 21 of the Rehabilitation Act Amendments
of 1992." American Rehabilitation, vol. 22, no. 1 (Spring
1996), pp. 2-6.
36 Anna M. Santiago,
Francisco Villarruel, and Michael J. Leahy, "Latino Access to Rehabilitation
Services: Evidence from Michigan." American Rehabilitation,
vol. 22, no. 1 (Spring 1996), pp. 10-17.
37 Carol Locust and
Jerry Lang, "Walking in Two Worlds: Native Americans and the VR
System." American Rehabilitation, vol. 22, no. 2 (Summer
1996), pp. 2-12.
38 Joseph Shapiro, No
Pity: People with Disabilities Forging a New Civil Rights Movement.
Random House, New York, 1994.
39 Thompson, 1997.
40 California State
Independent Living Council, "Independent Living: Report to the California
Legislature on State Services which Foster the Ability of People
to Live Independently." Sacramento, CA, March 1998, p. A1.
41 Thompson, 1997.
42 Wright and Leung,
1993.
43 Thompson, 1997.
44 Associated Press,
"Blacks Lag in Health Care Despite Other Gains: Economic Gap with
Whites Narrowing." Oakland Tribune, August 18, 1998, front
page.
45 Mary Bodily, "Disability
Services Outreach to Minorities Brings Majority Enrichment." In
Bridges: Dignity, Equality, Independence Through Employment.
Produced by the Howard University Research and Training Center and
the President's Committee on Employment of People with Disabilities,
Washington, DC, Winter 1997, pp. 9-10.
46 Community Resources
for Independence, "Native American Independent Living Center Grant
Application." Santa Rosa, CA, 1998, p. 8.
47 Community Resources
for Independence, 1998.
48 Tanner Silva, "Native
American Community Organizing Project (NACOP) recap notes." Community
Resources for Independence, Ukiah, CA, 1998, p. 1.
49 Silva, 1998.
50 Community Resources
for Independence, 1998.
51 Schroeder, 1996.
52 Bobbie J. Atkins,
"Prototype of Participatory Capacity Building Project (PCB): PCB
Quarterly Report." San Diego State University, Interwork Institute,
San Diego, CA, September, 1998, p. 2.
53 Paula Sotnik and
Rooshey Hasnain, "E-Mail Correspondence between Capacity Building
Project and CBMO Representatives." October 16, 1998.
54 Sotnik and Hasnain,
1998.
55 Leung, 1996.
56 Charles A. Riley
II, "The World According to Soros: Reaching to Extremes with Strategic
Philanthropy." WE, 1998, p. 18.
57 O. Ha., editor, Legislation
Regulating Immigration. Funk & Wagnalls New Encyclopedia, vol.
13, Funk & Wagnalls Corporation, 1994.
58 Leon J. Kamin, The
Science and Politics of I.Q. Halstead Press, New York, 1974.
59 James W. Trent, Jr.,
Inventing the Feeble Mind: A History of Mental Retardation in
the United States. In Medicine and Society, edited by
Andrew Scull, University of California Press, Berkeley and Los Angeles,
CA, 1994.
60 E.J. Emerick, "Progress
in the Care of the Feeble-Minded in Ohio." Journal of Psycho-Asthenics,
vol. 22, 1917, pp. 73-79.
61 Trent, Jr., 1994.
62 Henry Goddard, "The
Binet Tests in Relation to Immigration." Journal of Psycho- Asthenics,
vol. 18, December 1913, pp. 105-107.
63 Madison Grant, The
Passing of the Great Race; or the Racial Basis of European History.
New York, 1921.
64 E. Arthur Whitney,
"Our Horizon." American Journal of Mental Deficiency, vol.
50 (1945), pp. 218-230.
65 Trent, Jr., 1994.
66 National Council
on Disability, "Impact of the Welfare Reform Legislation on Legal
Immigrants with Disabilities." Washington, DC, June 23, 1997.
67 Legislative Analyst's
Office, "Federal Welfare Reform (H.R. 3734): Fiscal Effect on California."
Sacramento, CA, August 20, 1996.
68 Legislative Analyst's
Office, "LAO Analysis of the 1997-98 Budget Bill. Health and Social
Services Departmental Issues, 1-c." Sacramento.
69 National Council
on Disability, 1997.
70 Immigration and Naturalization
Service, FACT SHEET: Alien Eligibility for and Access to Public
Benefits. Available from http://www.ins.usdoj.gov/hqopp/factsfin.htm
(cited 1997).
71 Stephen Rosenbaum,
written testimony presented at the 1998 NCD Public Hearing on Meeting
the Unique Needs of Persons with Disabilities from Diverse Cultural
Backgrounds. San Francisco, CA, August 5, 1998.
72 National Council
on Disability, 1997.
73 Stephen A. Rosenbaum
Esq. et al., "Title II of the Americans with Disabilities Act/Section
504 of the Rehabilitation Act of 1973 Discrimination Complaint."
Attorneys for complainants, Berkeley, CA, July 2, 1998, attachment.
74 Richard K. Scotch,
From Good Will to Civil Rights. Temple University Press,
Philadelphia, 1984.
75 Rosenbaum, Esq. et
al., 1998.
76 Rosenbaum, Esq. et
al., 1998.
77 "Groups Attack INS
for Not Making Visits." San Francisco Chronicle, July 3,
1998, p. D5.
78 Janet Dang, "INS
Accused of Neglecting Disabled." Asian Week, July 9, 1998,
p. 14.
79 Dang, 1998.
80 Rosenbaum, Esq. et
al., 1998.
81 Rosenbaum, Esq.,written
testimony, 1998.
82 Immigration and Naturalization
Service, 1997.
83 Emily Bazelon, "Tighter
INS Fingerprinting Rules Frustrate a Disabled Applicant." Washington
Post, August 9, 1998.
84 Stephen A. Rosenbaum,
Esq., "Title II of the Americans with Disabilities Act/Section 504
of the Rehabilitation Act of 1973 Discrimination Complaint." Disability
Rights Education & Defense Fund, Berkeley, CA, August 11, 1998.
85 Emily Bazelon, "INS
Agrees to Expedite Paperwork of Disabled Man." Washington Post,
August 12, 1998.
86 Bazelon, 1998.
87 Rosenbaum, Esq.,
"Title II of the Americans with Disabilities Act/Section 504 of
the Rehabilitation Act of 1973 Discrimination Complaint," 1998.
88 Bazelon, 1998.
89 Rosenbaum, Esq.,
1998.
90 Dang, 1998.
91 Stephen A. Rosenbaum,
Esq., and Theresa A. Fisher, Esq., Correspondence between DREDF
and INS regarding the denial of the naturalization application for
Mr. K. 1998.
92 Rosenbaum, Esq.,
and Fisher, Esq., 1998.
93 Stephen A. Rosenbaum,
Esq., "Title II of the Americans with Disabilities Act/Section 504
of the Rehabilitation Act of 1973 Discrimination Complaint." Disability
Rights Education & Defense Fund, Berkeley, CA, March 9, 1998.
94 National Council
on Disability, 1997.
95 Jenny Ocon, "Barriers
Immigrants Face When Naturalizing: The Quest for Citizenship in
Northern CaliforniaNorthern California Coalition for Immigrant Rights."
San Francisco, April 1998, p. 11.
96 Starr, 1998.
97 Hans Johnson, A Brief
Look at the People of California. California Research Bureau, California
State Library, available from http://library.ca.gov/california/people_1.html
(cited 1995).
98 State of California
Department of Finance Demographic Research Unit, "Race/Ethnic Population
Estimates: Components of Change by Race, 1990-1996." State of California,
Sacramento, CA, January 1998.
99 Johnson, 1995
100 State of California
Department of Finance Demographic Research Unit, "California Population
By Race and Hispanic Origin: 1980 and 1990 Census." State of California,
Sacramento, CA, January 1998.
101 State of California
Department of Finance Demographic Research Unit, "Race/Ethnic Population
Estimates: Components of Change by Race, 1990-1996," 1998.
102 State of California
Department of Finance Demographic Research Unit, "Race/Ethnic Population
Estimates: Components of Change by Race, 1990-1996," 1998.
103 Office of Planning
and Resource Development, California Department of Rehabilitation,
1993.
104 Julia E. Bradsher,
"Disability Among Racial and Ethnic Groups." U.S. Department of
Education, National Institute on Disability and Rehabilitation Research,
Washington, DC, January 1996.
105 H.L. Thornhill
and D.A. HoSang, "Poverty, Race, and Disability." In Building
Bridges to Independence: Employment, Successes, Problems, and Needs
of African-Americans with Disabilities, edited by S. Walker
et al., Center for the Study of Handicapped Children and Youth,
School of Education, Howard University, Washington, DC, 1988, pp.
148-156.
106 Sylvia Walker et
al., "Disability Prevalence and Demographic Association Among Race/Ethnic
Minority Populations in the United States: Implications for the
21st Century." Howard University Research and Training Center for
Access to Rehabilitation and Economic Opportunity, Washington, DC,
1991.
107 Bradsher, 1996.
108 Leung, 1996.
109 State of California
Department of Finance Demographic Research Unit, "Race/Ethnic Population
Estimates: Components of Change by Race, 1990-1996," 1998.
110 Cheryl A. Utley
and Festus E. Obiakor, "Addressing Diversity in Special Education
Research.", June 1997.
111 D. Enwisle and
N.M. Astone, "Some practical guidelines for measuring youth's race/ethnicity
and socioeconomic status." Child Development, vol. 65 (1994),
pp. 1521-1540.
112 Anita Leal-Idrogo,
"Vocational Rehabilitation of People of Hispanic Origin." Journal
of Vocational Rehabilitation, vol. 3, no. 1 (1993), pp. 27-37.
113 M.J. Paris, "Attitudes
of Medical Students and Healthcare Professionals toward People with
Disabilities." Archives of Physical Medicine and Rehabilitation,
vol. 74, no. 3 (1993), pp. 818-825.
114 Leung, 1996.
115 Leung, 1996.
116 Julie F. Smart
and David W. Smart, "The Racial/Ethnic Demography of Disability."
Journal of Rehabilitation, vol. 63, no. 4 (October/November/December
1997), pp. 9-15.
117 Leung, 1996.
118 Bureau of the Census,
U.S. Department of Commerce, "Poverty Level of Hispanic Population
Drops, Income Improves, Census Bureau Reports." Economic & Statistics
Administration, Washington, DC, 1998.
119 Santiago, Villarruel,
and Leahy, 1996.
120 Sotnik and Hasnain,
1998.
121 Sotnik and Hasnain,
1998.
122 U.S. Department
of Commerce, "Social and Economic Characteristics, CALIFORNIA. 1990
Census of Population." Bureau of the Census, Washington, DC, September
1993, Table 45.
123 U.S. Department
of Commerce, 1993.
124 U.S. Department
of Commerce, 1993.
125 Walker, 1996.
126 California Department
of Rehabilitation, "Fiscal Year 1997 Annual Performance Report for
State Independent Living Services Program, Centers for Independent
Living Program." Sacramento, CA, 1998, Subpart I-F, p. 4.
127 Associated Press,
"Welfare Recipients May Help 2000 Census." February 11, 1999.
128 Utley and Obiakor,
1997.
129 Continental Congress,
"The Unanimous Declaration of the Thirteen United States of America."
In The Citizen's Handbook: Essential Documents and Speeches From
American History, edited by T.J. Stiles, Berkeley Books, New
York, July 4, 1776, p. 37.
130 Abraham Lincoln,
"The Gettysburg Address," in The Citizen's Handbook: Essential
Documents and Speeches From American History, edited by T.J.
Stiles, Berkeley Books, New York, November 19, 1863, p. 123.
131 Martin Luther
King, Jr., "I Have a Dream." In Contemporary American Voices: Significant
Speeches in American History, 1945-Present, edited by James Andrews
and David Zarefsky, Longman Publishing Group, White Plains, NY, 1963,
pp. 79-81. APPENDIX
MISSION OF THE NATIONAL COUNCIL ON
DISABILITY
Overview and Purpose
NCD is an independent federal agency with 15 members
appointed by the President of the United States and confirmed by
the U.S. Senate.
The overall purpose of NCD is to promote policies,
programs, practices, and procedures that guarantee equal opportunity
for all individuals with disabilities, regardless of the nature
or severity of the disability; and to empower individuals with disabilities
to achieve economic self-sufficiency, independent living, and inclusion
and integration into all aspects of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing basis,
policies, programs, practices, and procedures concerning individuals
with disabilities conducted or assisted by federal departments
and agencies, including programs established or assisted under
the Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act; as well as all
statutes and regulations pertaining to federal programs that assist
such individuals with disabilities, in order to assess the effectiveness
of such policies, programs, practices, procedures, statutes, and
regulations in meeting the needs of individuals with disabilities.
- Reviewing and evaluating, on a continuing basis,
new and emerging disability policy issues affecting individuals
with disabilities at the federal, state, and local levels and
in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts and the impact of such efforts on individuals with
disabilities, access to health care, and policies that act as
disincentives for individuals to seek and retain employment.
- Making recommendations to the President, Congress,
the secretary of education, the director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies about ways to better promote equal opportunity,
economic self-sufficiency, independent living, and inclusion and
integration into all aspects of society for Americans with disabilities.
- Providing Congress, on a continuing basis, with
advice, recommendations, legislative proposals, and any additional
information that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities Act
of 1990 (42 U.S.C. 12101 et seq.).
- Advising the President, Congress, the commissioner
of the Rehabilitation Services Administration, the assistant secretary
for Special Education and Rehabilitative Services within the Department
of Education, and the director of the National Institute on Disability
and Rehabilitation Research on the development of the programs
to be carried out under the Rehabilitation Act of 1973, as amended.
- Providing advice to the commissioner with respect
to the policies and conduct of the Rehabilitation Services Administration.
- Making recommendations to the director of the National
Institute on Disability and Rehabilitation Research on ways to
improve research; service; administration, and the collection,
dissemination, and implementation of research findings affecting
persons with disabilities.
- Providing advice regarding priorities for the activities
of the Interagency Disability Coordinating Council and reviewing
the recommendations of this council for legislative and administrative
changes to ensure that such recommendations are consistent with
NCD's purpose of promoting the full integration, independence,
and productivity of individuals with disabilities.
- Preparing and submitting to the President and Congress
an annual report titled National Disability Policy: A Progress
Report.
International
In 1995, NCD was designated by the Department of State
to be the U.S. government's official contact point for disability
issues. Specifically, NCD interacts with the special rapporteur
of the United Nations Commission for Social Development on disability
matters.
Consumers Served and Current Activities
While many government agencies deal with issues and
programs affecting people with disabilities, NCD is the only federal
agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, status as a veteran,
or other individual circumstance. NCD recognizes its unique opportunity
to facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of persons with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, it was NCD that originally proposed what eventually
became the Americans with Disabilities Act (ADA). NCD's present
list of key issues includes improving personal assistance services,
promoting health care reform, including students with disabilities
in high-quality programs in typical neighborhood schools, promoting
equal employment and community housing opportunities, monitoring
the implementation of ADA, improving assistive technology, and ensuring
that persons with disabilities who are members of minority groups
fully participate in society.
Statutory History
NCD was initially established in 1978 as an advisory
board within the Department of Education (Public Law 95-602). The
Rehabilitation Act Amendments of 1984 (Public Law 98-221) transformed
NCD into an independent agency.
|