Creating a Voice

November 10, 2006 –TASH Annual Conference, Baltimore Convention Center
Written Presentation (Gerrie Drake Hawkins, Ph.D.)

Thank you for the gracious introduction, as well as this opportunity to bring greetings and share information. Please accept an expression of warm greetings on behalf of the National Council on Disability and its Cultural Diversity Advisory Committee to whom you extended the invitation. This occasion is a "first" with respect to an NCD presentation at the People of Color Strand of TASH. Therefore, we thank Mr. Ralph Edwards for his initial contact with the NCD Cultural Diversity Advisory Committee Chair person, Mr. Darrell K. Simmons, J.D. of Houston, Texas.

With the understanding that a purpose of this town hall meeting is to share information about promising practices focusing on people with significant disabilities and their families primarily from diverse racial and ethnic groups, two questions surfaced: (1) What relevance is the National Council on Disability to the session on Creating a Voice? (2) Why is this gathering necessary?  Together let us take a brief look at statutory authority and background for NCD, a childhood personal story, emphasis on commonality, some promising practices, and concluding comments.

Statutory Authority and Background: The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed NCD into an independent agency, after its 1978 advisory board origin within the U.S. Department of Education (P.L. 95-602). As an independent agency, NCD provides Congress with advice and legislative proposals, and makes recommendations to the President and other federal agency officials regarding all federal laws affecting the lives of people with disabilities. The agency focuses on better ways to promote equal opportunity, economic self-sufficiency, independent living, inclusion and integration into all aspects of society for Americans with disabilities. Unlike other federal agencies charged to enforce federal laws, administer programs, and address issues, including call attention to disparity and disproportionate findings for people with disabilities from diverse racial and ethnic groups,1 without programs to administer, NCD has the charge to address, analyze, and make recommendations from a public policy perspective.

A Childhood Story:  Participation in the People of Color Strand town hall meeting is within the scope of NCD's authorizing statute and the New Freedom Initiative goal of integrating all Americans with disabilities into mainstream society. Consider, if you will, a brief story. It bears telling perhaps, to motivate collective efforts to end all types of exclusion. Whether stigma or discrimination is based on disability, race, language, culture or a combination, the sting is painful.

Color brings to mind a host of childhood memories. In her sewing room Mother always had multi-colored spools of thread and scraps of pretty materials—organdy, voile, and dotted Swiss—that she allowed her two little girls to fold and sometimes use for "pretend" time; Daddy raked multi-colored leaves in their backyard and the yards of people with higher incomes.  They paid him little to trim hedges and cut grass. Such work was on weekends and on evenings after his fulltime employment at "the Shipyard." In a Tidewater Virginia town during late fall the tree-lined streets glistened with a mixture of gold, red, brown and tan falling leaves. The colors were pleasant reminders of upcoming holidays—warm family times anticipated during brisk cold days and nights ahead. To an eager four year-old poised to practice her reading skills wherever there was any printed word—signs on city busses, restaurants, and the public library doors that included the word "color" were puzzling, especially since those signs always included the word "no" or "only" and the letters "ed" at the end. A sign of fading childhood innocence was evident when in response to their young child's insistent questions Mother and Daddy corrected her utterance of "color" + "ed" that had sounded more like "color red" and ushered the child into the reality of growing up in the 1950s. A little girl soon learned that the "colored" signs were there to say you are not welcome. That early awakening to the world of color decades ago could have functioned only to spoil a little girl's simple joy of reading, yet it served a positive purpose, as well.  It propelled a lifetime determination to fight against injustice, prepare for entrance inside previously closed doors, strive to contribute to the knowledge base, and to keep watch for others emerging on the scene to whom a maturing generation will need to pass the baton as smoothly as possible. And so, I, that little girl of yesterday, now a maturing member of the federal public policy workforce stand before you today.

Emphasis on Commonality:  Welcome is the keyword for transition from the story. Give it an operational definition—to receive, appreciate, or embrace—to be comfortable. Level of comfort in life situations have been shown to increase with growth in awareness of common traits, traditions, or values.  Can you imagine the heightened level of comfort when it was learned that TASH and NCD website statements show common traits in mission and purpose? The TASH mission is "to eliminate physical and social obstacles that prevent equity, diversity, and quality of life; the purpose is working together to create change and build capacity so that all people, no matter their perceived level of disability, are included [if I might add, welcomed] in all aspects of society."2 NCD aims among its functions to empower individuals with disabilities to achieve economic self-sufficiency, independent living, inclusion and integration [here one might add, and to be welcomed] into all aspects of society.3 NCD established its Cultural Diversity Advisory Committee (CDAC) to provide advice and recommendations to NCD on issues affecting people with disabilities from different racial and ethnic backgrounds. Specifically, among its advisory tasks the committee is charged to elevate the voices of underserved and unserved segments of this nation's population. The CDAC vision is: "We shall create a culturally and linguistically competent, barrier-free society that promotes unlimited equal access, inclusion and opportunity for all people including those with disabilities."4  CDAC's efforts will help NCD develop federal policy that includes calling attention to the needs and advancing the civil and human rights of people from diverse racial and ethnic groups.

In Search of Promising Practices: The impact of NCD's work on the empowerment of people with disabilities across the spectrum of significance and diversity may be found within a record that reaffirms self-determination, dignity, and value for millions of Americans with disabilities. Relevant practices by NCD include collection and inclusion of public input in key reports, calling attention to unmet enforcement of existing laws, service and program needs, hosting dialogue for partnership opportunities, and supporting public and private collaboration around common issues.

Stakeholders have described NCD's practice of obtaining public input as a positive practice. For more than a decade of outreach to people with disabilities across diverse racial, ethnic, age and limited English proficiency groups, NCD has incorporated in its reports the collective wisdom of consumer participants in hearings, round-table discussions, teleconferences, and think-tank forums.  These actions align with NCD's authority concerning individuals with disabilities to review and evaluate, on a continuing basis, policies, programs, practices, and procedures conducted or assisted by federal departments and agencies.

Unfortunately, the NCD reports since the early 1990s show recurring issues and unaddressed needs. Multiple examples of persistent barriers and perceptions of dual discrimination document that people from diverse racial and ethnic groups are the least served, yet most in need of improved and appropriate services (NCD 1993; 1999, 2003a; 2003b; AAPD/NCD 2006).5  A revised CDAC fact sheet (October 2006) also recognizes that despite some data reporting concerns,6 the available information reveals unmet needs in education,7 healthcare and economic status alone or in combination. For example:  (1) Poverty has emerged as one predictor of disability; employed people with disabilities who are from diverse cultures experience poverty rates that are more than twice the rates for other workers. (Fujiura, 1999; 2001); (2) School dropout rates for youth from diverse cultures who also have disabilities are twice the dropout rates of other students (NCD 2000a; 2003);  (3) Employment findings are bleak for diverse racial and ethnic groups [e.g., disproportionate unemployment rates for people with disabilities are African Americans 72% and Hispanics 51.9% (ODEP/DOL, 2006)].

Over the years, NCD's evaluative reports on key federal disability laws, policies, and practices recognize that all branches of the federal government must work together. Practices with promise to improve results for all people with disabilities, including people from diverse racial and ethnic backgrounds and people with significant disabilities should incorporate, but are not to be limited to actions such as follows: 
(1) Effective enforcement of existing laws; (2) Increased service provider, consumer, and family access to culturally and linguistically appropriate information about rights, protections, outreach and training; (3) Inclusive planning, implementation, and interpretation of research findings; and (4) Improved coordination and evaluation of policies and programs.

NCD's recommendations to the President and Congress continue to encourage and support empowerment of all people to benefit from federal laws, programs and services. Partnership, outreach, and collaboration activities can enhance the way federal agencies fully include and meaningfully engage people with disabilities from diverse cultures. Federal modeling practices are among the NCD recommendations in a recent report, Creating Livable Communities.8 For example, streamline federal processes by using grant funds from specific federal agencies to offer a consolidated Livable Communities Program Initiative; modify and make consistent across states the federal requirements for allocation of low-income housing tax credits to developers. More details are available at http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm .
Concluding comments:
Of what importance in the 21st Century are efforts like the TASH People of Color Strand that call attention to unmet needs of people with significant disabilities who are from diverse racial and ethnic groups?  A response stated simply is disproportionate numbers. People from diverse cultures constitute a disproportionate share of the disability community compared to their representation across the U.S. population in general; a growing body of research also substantiates some unique unaddressed needs not experienced by other people with disabilities; and changing national demographics.9 Policy, process, and practice across federally funded services and programs need the "voices" of people from underserved and unserved racial and ethnic groups, including people with disabilities speaking for themselves.
NCD stands ready to continue its role providing opportunity for dialogue and building collaborations or in other ways consistent with agency statutory authority.  Thank you.

References
American Association of People with Disabilities and National Council on Disability (2006). Same Struggle, Different Difference: Civil Rights and Disability Rights Policy Forum – Summary Paper, March 29, 2006. Washington, DC:  http://www.aapd-dc.org/News/disability/civilrightsforum.html   
 
American Indian Rehabilitation Research and Training Center (2003). An Analysis of Disability and Employment Outcome Data for American Indians and Alaska Natives. http://www.nau.edu/ihd/airrtc/R-48.htm 
 
Centers for Disease Control (1986). Morbidity and Mortality Weekly Report: Centers for Disease Control and Prevention. February 28, 1986 / 35(8)109-12. http://www.cdc.gov/mmwr/preview/mmwrhtml/00000688.htm 
 
Fujiura, Glenn T. (1999). The Implications of Emerging Demographics: A Commentary on the Meaning of Race and Income Inequity to Disability Policy. http://www.mswitzer.org/sem99/papers/ fujiura.html
 
Fujiura, G., & Rutkowski-Kmitta, V. (2001).  Counting Disability, in Albrecht, G. L., Seelman, K. G., & Bury, M. (Eds.), Handbook of Disability Studies. Thousand Oaks, California: Sage.
 
National Council on Disability (1998). Grassroots experience with government programs and disability policy.  Washington, DC:  Author.  http://www.ncd.gov/newsroom/publications/ louisiana.html
 
National Council on Disability (1999). Lift Every Voice: Modernizing Disability Policies and Programs to Serve a Diverse Nation. Washington, DC:  Author. http://www.ncd.gov/newsroom/publications/ lift_report.html
 
National Council on Disability (2000a). Transcending the Barriers and Gaining Entry:  A Culturally Competent Realm of Community Integration for Americans with Disabilities.  Washington, DC: Author. http://www.ncd.gov/newsroom/advisory/cultural/barriers_rev051800.htm
 
National Council on Disability (2000b). Carrying On The Good Fight: Summary Paper From Think Tank 2000--Advancing The Civil And Human Rights Of People With Disabilities From Diverse Cultures. Washington, DC: Author.
http:// www.ncd.gov/newsroom/publications/ think2000.html 
 
National Council on Disability (2003a). Outreach for All Forum Summary Paper. Paths to Support Individual Empowerment of People with Disabilities from Diverse Cultures. Washington, DC: Author. http://www.ncd.gov/newsroom/advisory/cultural/forum_summary.htm 
 
National Council on Disability (2003b). People with Disabilities on Tribal Lands: Education, Health Care, Vocational Rehabilitation, and Independent Living. Washington, DC: Author. http://www.ncd.gov/newsroom/publications/tribal_lands.html    
 
National Council on Disability (2005). Same Struggle, Different Difference: Civil Rights and Disability Rights Policy Forum - Notes From Topical Group Reports - March 29, 2005. Washington, DC: Author. http://www.ncd.gov/newsroom/advisory/cultural/group_notes.htm   
 
U.S.  Department of Health and Human Services (2001). Mental Health: Culture, Race, and Ethnicity—A Supplement to Mental Health: A Report of the Surgeon General, Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services.
http://www.surgeongeneral.gov/library/mentalhealth/cre/  
 
U.S. Department of Labor (2006). Disability and Cultural Diversity. U.S. Department of Labor, Office of Disability Employment Policy. Washington, DC: http://www.dol.gov/odep/pubs/ek98/disabili.htm.

1 Three brief examples covering more than a decade highlight some unmet physical health, mental health, and employment needs associated with racial and ethnic background of consumers and their families. In October 1985, a U.S. Department of Health and Human Services (HHS) task force issued a landmark report on long-standing health disparities (African Americans, Hispanic Americans, Asian Americans, Pacific Islanders, American Indians and Alaska Natives compared to white-non-Hispanic Americans). Another outcome was establishment of a special office to address the issues and links between health status, injuries, and secondary disabilities. That fueled HHS recommendations for culturally appropriate outreach campaigns, public education materials, methods, and service provision. A 2001 HHS report found that people from diverse racial and ethnic groups have less access to, availability of mental health care, and receive poorer quality services with less help for recovery than the mainstream population. An October 2006 report from the U.S. Department of Labor revealed that persistent disproportionately high unemployment findings are linked to factors such as disparity in rehabilitation services provided to people with disabilities, limited available and affordable educational opportunities and inadequate accessible transportation and housing.

2 http://www.tash.org/index.html

3 http://www.ncd.gov/

4 http://www.ncd.gov/newsroom/advisory/cultural/cultural.htm#reports

5 See reports identified in the list of references above

6 As one example, data collected by public health and human services agencies about American Indians and Alaska Natives are fraught with omissions; the existing body of data is of such questionable quality that statistics based on these data cannot be used with confidence. Therefore, special efforts are needed to design and implement research that not only includes but also specifically focuses on American Indians and Alaska Natives. (AIRRTC 2003) At the writing of this presentation for the TASH town hall meeting, concerned parties reported to NCD that funding support for such research and technical assistance were being discontinued by the U.S. Department of Education. Information was unknown with respect to plans for how and/or whether appropriate and culturally sensitive work would be implemented to address ongoing unmet needs in Indian Country.

7 Under counting of people from various diverse racial and ethnic groups also compounds the issues that can influence public policy making. Problems continue to be associated with widely used and often inconsistent disability data. This extends to Census 2000 data, including issues surrounding the collection and analysis of relevant and reliable statistical data on America's population with disabilities. The accuracy of the data is critically important in an era of evidence-based policy because misleading information can lead to misguided/premature public policy decisions. In FY 2006, NCD began a study to address some of the issues. Progress on the work in this area is anticipated in FY 2007.

8 http://www.ncd.gov/newsroom/publications/2006/livable_communities.htm

9 By the year 2050, people from diverse racial and ethnic populations are expected to represent nearly half of the U.S. population. Racial and Ethnic Disparities in Health Care. Alliance for Health Reform, November 2006. http://www.allhealth.org/publications/pub_38.pdf