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National Council on Disability

1331 F Street, NW, Suite 1050

Washington, DC 20004-1107

LIFT EVERY VOICE

Modernizing Disability Policies and Programs to Serve a Diverse Nation

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).

Publication date: December 1, 1999

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

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 form 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, and we appreciate the leadership of Mary Beth

Cahill and so many senior Administration officials and members of Congress in helping to call

attention to these issues on 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 On 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.)
ii
iii

LIFT EVERY VOICE AND SING

 ́7KH%ODFN1DWLRQDO$QWKHPμ

-DPHV:HOGRQ-RKQVRQ

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.

v

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

vii

$&.12:/('*0(176

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.
viii
ix

&217(176

EXECUTIVE SUMMARY ...............................................1

I. HAVING A SEAT AT THE TABLE: BARRIERS TO RESOURCES ..............5

A. BARRIERS TO EMPLOYMENT .................................... 5

B. BARRIERS TO PUBLIC ACCOMMODATIONS ....................... 8

C. BARRIERS TO TRANSPORTATION ................................ 9

D. BARRIERS TO CULTURALLY COMPETENT SERVICE DELIVERY . . . 11

1. MINORITY REPRESENTATION IN DISABILITY SERVICE

PROFESSIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

2. CULTURALLY APPROPRIATE OUTREACH . . . . . . . . . . . . . . . . . . 14

3. LANGUAGE AND COMMUNICATION BARRIERS . . . . . . . . . . . . 17

II. GETTING IN THE DOOR: BARRIERS TO CITIZENSHIP . . . . . . . . . . . . . . . . . . . 21

III. BEING RECOGNIZED: THE NEED FOR ACCURATE DEMOGRAPHIC DATA . 25

A. INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

B. BARRIERS TO RESOURCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

1. OVERVIEW . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

2. ANALYSIS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

B. BARRIERS TO CULTURALLY COMPETENT SERVICE DELIVERY . . . 55

1. OVERVIEW . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

2. ANALYSIS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

C. BARRIERS TO CITIZENSHIP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92

1. OVERVIEW . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92

2. ANALYSIS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92

D. BARRIERS TO ACCURATE DEMOGRAPHIC DATA . . . . . . . . . . . . . . . . 105

1. OVERVIEW . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105

2. ANALYSIS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106

IV. CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115

V. NOTES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 118

Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
1

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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
2

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: 

1. Having a Seat at the Table&Barriers to Employment, Public

Accommodations, Transportation, and Culturally Competent Service

Delivery.

2. Getting in the Door&Barriers to Citizenship.

3. 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
3

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
4

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. 
5

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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
6

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.
7

• 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
8

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.

% %$55,(567238%/,&$&&2002'$7,216

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.
9

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.

& %$55,(567275$163257$7,21

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
10

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.
11

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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 disabilityrelated 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,
12

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
13

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.
14

• 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
15

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.
16

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.
17

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.
18

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.
19

 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.

21

,, *(77,1*,17+('225%$55,(5672&,7,=(16+,3

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 homebased 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
22

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 longstanding 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.
23

25

,,, %(,1*5(&2*1,=('7+(1((')25$&&85$7('(02*5$3+,&

'$7$

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
26

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.

$ ,1752'8&7,21

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
27

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
28

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. 
29

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
30

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.

% %$55,(56725(6285&(6

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
31

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.
32

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
33

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
34

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.
35

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
36

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
37

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
38

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
39

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:
40

• 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
41

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. 
42

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.
43

• 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:
44

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 when 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
45

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 accessibility 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
46

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
47

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
48

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.
49

• 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.
50

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 place 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
51

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.
52

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 disabilities 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
53

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.
54

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 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. 

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.
55

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.

% %$55,(5672&8/785$//<&203(7(176(59,&('(/,9(5<

1. Overview

This chapter discusses persistent barriers to culturally competent delivery of disabilityrelated 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
56

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.
57

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
58

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 limitedEnglish-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.
59

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
60

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
61

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
62

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." 
63

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
64

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
65

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,
66

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
67

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. 
68

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
69

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
70

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
71

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
72

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."
73

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
74

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 Ricans, 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. 
75

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
76

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 individual 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 harmony, 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
77

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:
78

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
79

services. Churches, recreational facilities, etcetera, should be contacted and

brought into the process simply because 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
80

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
81

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
82

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
83

"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:
84

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
85

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 three 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
86

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
87

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
88

[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
89

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. 
90

• 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 nonEnglish-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
91

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.

& %$55,(5672&,7,=(16+,3

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
92

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
93

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
94

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
95

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.
96

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
97

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
98

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
99

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
100

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
101

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
102

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."
103

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
104

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
105

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.

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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. 
106

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.
107

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:
108

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
109

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
110

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
111

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. 
112

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.
113

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:
114

• 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.
115

,9 &21&/86,21

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
116

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,
117

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.

119

9 127(6

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120

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37. Carol Locust and Jerry Lang, "Walking in Two Worlds: Native Americans and the

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Movement. Random House, New York, 1994.

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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.

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1997, pp. 9%10.

46. Community Resources for Independence, "Native American Independent Living

Center Grant Application." Santa Rosa, CA, 1998, p. 8.

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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.
123

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.

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59. James W. Trent, Jr., Inventing the Feeble Mind: A History of Mental Retardation in

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61. Trent, Jr., 1994.

62. Henry Goddard, "The Binet Tests in Relation to Immigration." Journal of PsychoAsthenics, vol. 18, December 1913, pp. 105%107.

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64. E. Arthur Whitney, "Our Horizon." American Journal of Mental Deficiency, vol. 50

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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

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69. National Council on Disability, 1997.
124

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Access to Public Benefits. Available from

http://www.ins.usdoj.gov/hqopp/factsfin.htm (cited 1997).

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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."

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74. Richard K. Scotch, From Good Will to Civil Rights . Temple University Press,

Philadelphia, 1984.

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79. Dang, 1998.

80. Rosenbaum, Esq. et al., 1998.

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125

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Citizenship in Northern CaliforniaNorthern California Coalition for Immigrant

Rights." San Francisco, April 1998, p. 11.

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130

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0,66,212)7+(1$7,21$/&281&,/21',6$%,/,7<

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 selfsufficiency, 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 operate 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, respecting 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, 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 USC 12101 et seq.).

• Advising the President, Congress, the Commissioner of the Rehabilitation Services

Administration, the Assistant Secretary for Special Education and Rehabilitative Services
131

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 the

purposes of NCD to promote 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 official contact point

with the U.S. government 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. 
132

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.