National Council on Disability
Summary Recommendations on Unserved and Under-served People with Disabilities
May 18, 2000
The prevalence and severity of disabilities, the inappropriateness and quality of services and high level of unfavorable outcomes are disproportionate for people with disabilities from diverse racial/ethnic groups nationwide. Among the 54 millionAmericans with disabilities, the prevalence of disability among African Americans, Hispanic/Latino Americans, American Indians/Native Americans, Alaska Natives, Asian Americans and Pacific Islanders is often disproportionately higher than their representation in the overall national census. In 1996, people with severe disabilities were reported as 9.6 percent of the general population and 12.2 percent of African Americans. In 1998 the U.S. Census Bureau reported that the prevalence of disability was approximately 20.6 percent for the general population, and nearly 22 percent for combined groups of people from diverse racial/ethnic backgrounds, with the greatest incidence reported as 21.9 percent for tribal communities. Census 2000 raised the estimate for American Indians to 22 percent overall and to 27 percent for 16 to 64 year old tribal members.
Research on people with disabilities from diverse cultures is sparse because the disaggregation of overall disability data has been limited and little research attention has been given to the unique needs of people with disabilities from diverse racial/ethnic populations. However, emerging trends across data and issues call attention to topical categories that may reflect the interaction of various factors and pose major challenges to meaningful integration and opportunities for the full participation of people with disabilities from diverse racial/ethnic backgrounds in all aspects of society. The factors include, but are not limited to poverty, economic depression, and awareness and access barriers. Un-served and under-served people with disabilities, including people from diverse racial/ethnic backgrounds, face unmet needs related to the level and quality of support made available in areas impacting daily living such as education, employment, health and medical care services, housing, independent living, and transportation. While information dissemination, outreach, and inclusive leadership opportunities have resulted in at least some improvements for people with disabilities in the mainstream disability community, people with disabilities from diverse racial/ethnic backgrounds have not been equal beneficiaries of federal legislation and initiatives. In essence, people from diverse backgrounds have not been full participants in national efforts to eliminate disparities, remove barriers, close gaps in service provision or provide opportunities for participation in policy making, program design and implementation.
The National Council on Disability (NCD) has taken a leadership role in gathering information about and from consumers with disabilities, advocates, and people in the public and private arena to investigate the breadth of the gaps in legislative mandates, implementation, and enforcement, as well as recommend ways of addressing issues, concerns and unmet needs. The work has been accomplished through national and regional focus groups, symposia, hearings, forums, and workshops with participants invited and encouraged to share perspectives on concerns, issues, and proposed resolutions. As a result, over the past seven years since input gathered from and about the un-served and under-served people in the disability community began, NCD has included in its reports to the Administration and Congress recommendations about ensuring equal protections of civil and human rights for people with disabilities from diverse racial/ethnic backgrounds.
SUMMARY OF RECOMMENDATIONS FROM NCD's 1993-2000 REPORTS
The purpose of this NCD summary is to: (a) promote more effective federal policies, guaranteeing equal access and opportunity for all Americans with disabilities irrespective of gender, ethnicity, nature of disability, or socio-economic status; and (b) add information to the knowledge base for supporting the empowerment of all people with disabilities who wish to live independently and experience full community integration and full participation in society.
Relevant NCD reports that address issues, concerns, and recommendations to improve the lives of people with disabilities from diverse cultures can be accessed in the Publications section of NCD's website at /publications. The report titles are as follows:
1. ADA Watch - Year One: A Report to the President and the Congress on Progress in Implementing the Americans with Disabilities Act (April 5, 1993)
2. Meeting the Unique Needs of Minorities with Disabilities: A Report to the President and the Congress (April 26, 1993)
3. Achieving Independence: The Challenge for the 21st Century - A Decade of Progress in Disability Policy - Setting an Agenda for the Future (July 26, 1996)
4. National Council on Disability Outreach to Minorities with Disabilities and People with Disabilities in Rural Communities(August 4, 1997)
5. Grassroots Experience with Government Programs and Disability Policy (October 1, 1998)
6. Lift Every Voice - Modernizing Disability Policies and Programs to Serve a Diverse Nation (July 26, 1999)
7. Back to School on Civil Rights (January 25, 2000)
From a review of the reports, eight broad topical categories emerged as recurring themes. Based on recommendations made between April 1993 and January 2002, the categories are as follows:
- Information dissemination and outreach
- Health and medical services
- Housing and independent living
- Equal opportunity
- Inclusive leadership
Primarily, during this same seven-year period (1993-2000), NCD's recommendations urged Congress and the Administration to ensure that meaningful efforts were made to address unmet needs of un-served and under-served people identified in the reports. Particular focus was given to areas where barriers and challenges disproportionately impacted the lives of un-served and under-served people from diverse racial/ethnic backgrounds. Most common across all of the categories of recommendations were calls for concrete actions that involved improving outreach efforts. NCD also advised that key issues should be addressed through legislative actions, executive orders, directives, and requirements for specific internal federal agency actions, and interagency actions. As such, there were five cluster areas around actions that included: enforcing existing laws, expanding training opportunities, improving outreach efforts,promoting inclusive leadership, and implementing innovative approaches. Through its recommendations NCD advised that Congress and the President should ensure:
- Active participation and increased collaboration among all Cabinet level departments and offices of federal and state governments for effective implementation and monitoring of the existing legislative provisions;
- Implementation of adequate and accessible training opportunities for un-served and under-served people in key areas such as: disability and civil rights awareness, federal legislation, cultural awareness, attention to health and medical care concerns, and cross-cultural issues;
- Meaningful involvement of people with disabilities from diverse racial/ethnic backgrounds, their families, practitioners, community based organizations, and other people in federal level policy making;
- Research endeavors, culturally appropriate dissemination of information, decisions about delivery of service, leadership development, and outreach to un-served and under-served populations;
- Enhancement of professional preparation and greater participation for practitioners of diverse racial/ethnic backgrounds, including efforts to engage people with disabilities in all spheres of federally funded programs, projects, or activities, including leadership for policy making; and
- Use of appropriate technology and other contemporary measures to transcend barriers that block service access, such as those imposed by geographic location, poverty, and severe climatic or weather conditions.
In summary, this paper did not include new recommendations. It highlighted actions nestled within earlier NCD recommendations that can serve as the catalyst for developing and implementing new action plans. NCD's 1993-2000 report recommendations called for Administrative, Congressional, and/or federal agency actions to enhance positive outcomes in the lives of all un-served and under-served people, including people with disabilities from diverse racial/ethnic backgrounds. In essence, NCD recommended actions that embrace creative approaches, emphasize integrated resolutions, and can strengthen relationships among broad coalitions of disability, civil, and human rights entities in ways that can ultimately benefit all Americans.
 While definitions vary and use of "cultural sensitivity" may be the preferred term in some circles, according to Public Law 106-402, Amendments to The Developmental Disabilities Assistance and Bill of Rights Act of 2000: Cultural Competence may be defined as a set of values, behaviors, attitudes, and practices within a system, organization, program or among individuals and which enables them to work effectively cross culturally . . . ability to honor and respect the beliefs, language, interpersonal styles and behaviors of individuals and families receiving services, as well as staff who are providing such services. . . At [all levels] cultural competence requires a comprehensive & coordinated plan [with attention to needs for]: (1) policy making; (2) infra-structure building; (3) program administration and evaluation; (4) the delivery of services and enabling supports; and (5) the individual.
 Special appreciation is extended to Madan M. Kundu, Ph.D., and Alo Dutta, Ph.D., Southern University at Baton Rouge, LA for research and technical assistance with the development of the original summary document for NCD's Think Tank 2000, May 18, 2000; Revised July 2003.
 Problems continue to be associated with widely used disability data in Census 2000, including issues surrounding the collection and analysis of relevant and reliable statistical data on America's population with disabilities. The accuracy of these data are critically important in the arena of evidence-based policy because misleading information can lead to misguided or premature public policy decisions.