From Cultural Dialogues and Community Organizations to the Growth in NGOs-Gender, Disability and Ethnicity

From Cultural Dialogues and Community Organizations 

to the Growth in NGOs-

Gender, Disability and Ethnicity

Julie Ann Racino

2018

Excerpted from Racino, Julie Ann. (2003). Utica Monday Nite: Arts, Culture, Nature and History at the City Level. Rome, NY: Community and Policy Studies. 

Cultural Dialogues (pp. 8-9)

     The World Trade Center bombings (2001) in New York City, New York held the opportunity to increase the public's awareness of religion and cultures, with the government itself seeking to educate about the diverse beliefs of Nations (e.g., Islam). The multicultural dialogue (e.g., O'Connor, 1993), similar to the cultural sciences (O'Connor, 2000), sought to introduce frameworks (e.g., Arab versus a prevalent Israeli approach to political choices; native American spiritual beliefs about nature and spirit worlds) into Western beliefs dominating fields such as disability in the US. Disability culture (Brown, S.E., 1994) developed as separate lines of research and study often with an inclusion and diversity base.  

    In contrast, the study of the newly formed nation-states (e.g., Curtis 1996) and historical studies based on ethnic and cultural heritage (Pula, 1995) often remained as separate fields of study. Leaders from the Utica area represented in Heritage Park included John G. Moses and E. P. Nassar with prominent writings on Lebanese Americans, James Pula (2002) on diverse ethnic groups (e.g., Italians, Ukranians, Oneida Indian Nation, The Jewish Community, German-American, African Americans, Polish-Americans, Bosnians, Irish, The Welsh, Lebanese), and Zogby International with its agreements worldwide for polling (e.g., Arab Emirate Republics). 

Bell, J.C. & Freuman, L.U. (1999). Stretch your wings: Famous black quotations for teens. Boston: Little, Brown and Company. 

Brown, S.E. (1994). Disability culture beginnings: A fact sheet. Las Cruces, NM: Institute on Disability Culture. 

Cleveland, W.L. (1980). Ch. 17: From black September to "Peace in Galilee": Egypt, Israel, Lebanon and the Palestinian National Movement. A history of the modern middle East. (pp. 324-352). Boulder, CO: Westview Press. 

Connor, S. (2000). Cultural sociology and cultural sciences. In: B.S. Turner (Ed.), The Blackwell companion to social theory. (pp. 352-385). Malden, MA: Blackwell Publishers, Inc. 

Curtis, G. (1996, March). Kazakstan, Kyrgystan, Tajikistan, Turkmenisten, & Uzbekistan. Washington, DC: Federal Research Division, Library of Congress. 

D'Argenio, N.L. (1994, November). Italian American heritage. Rome, NY: Italian American Heritage Association.

Flint, D. (1996).  Bosnia: Can there ever be peace? Austin, TX: Raintree Steck-Vaugh Publishers. (children's literature)

Moses, J.G. (1981). From Mt. Lebanon to the Mohawk Valley: The story of Syro-Lebanese Americans to the Utica area. Utica, NY: Utica College. 

Nassar, E. P. (1999). A walk around the block: Literary text and social contexts. Utica, NY: Utica College of Syracuse University, Ethnic Studies Heritage Center. 

O'Connor, S. (1993, June). Disability and the multicultural dialogue. Syracuse, NY: Syracuse University, Center on Human Policy (http://soeweb.syr.edu/the chp/multovl.html).

Pula, J.S. (1995). Polish-Americans: An ethnic community. NY, NY: Twayne Publishers. 

Pula, J.S. (Ed.). (2002). Ethnic Utica. Utica, NY: Oneida Historical Society. 

Thorpe, J. (1979, February). Afro-American Heritage. Rome, NY: Afro-American Heritage Association. 

Traustadottir, R., Lutfiyya, Z., & Shoultz, B. (1994). Community living: A multicultural perspective. In: M. Hayden & B. Abery (Eds.), Challenges for a service system in transition. (pp. 405-426). Baltimore, MD: Paul H. Brookes. 

Vezzosi, W. (2001). Radical ethnic brokers: Immigrant socialist leaders in the United States between ethnic community and the larger society. In: D.R. Gabaccia & F.M. Ottanelli (Eds.), Italian workers of the world: Labor migration and the formation of ethnic states. (pp. 121-138). Urbana and Chicago, IL: University of Illinois Press. 

West, C. (1991). The new cultural politics of difference. In: S. During, The cultural studies reader. (pp. 203-217). London and NY,  NY: Routledge. 

Zogby, J.J. (2001). What ethnic Americans really think. Utica, NY: Zogby International.

In 2016, Syracuse University, School of Education continues to have a Cultural Foundations of Education track which includes disability culture and politics.  Dr. Sari Biklen (now passed), Professor in the Department, is featured in the Education handbooks and chronicles.  O'Connor, Traustadottir, Lutfiyya, and Shoultz were Ph.D. students of Professor Emeritus Steven J. Taylor, Center on Human Policy, then of Dean Douglas Biklen's School of Education (See, wikipedia).

Community Organizations (pp. 23-24)

     A significant development in the 1990s was the renewal of the importance of community organizations (e.g., Berkowitz, 1999) to the future of communities and neighborhoods. Community organizations have tended to be viewed as linchpins to community participation of people with disabilities (e.g., Lutfiyya, 1988; TLS 1979); however, seldom were they studied and analyzed  from the theoretically and philosophically diverse forms of community integration (See, wikipedia), independent living and community inclusion (e.g., Racino, 1991). In addition, community organizations also developed new services, specifically family support and housing during the period of the 1980s which have evolved today (e.g., Bersani, 1987; Racino, 1995). 

     Community organizations were part of significant public policy initiatives involving the popular private-public partnerships and investments (Bergman & Singer, 1996). For example, family support, while universally recognized, often had difficulty in influencing and molding "entrenched professions" (e.g., "behavioral health care"). By the year 2000,  legal cases were still in process regarding worldwide organizations (with local chapters) which are "all male with auxiliary women's groups" (See, below, 2018), and which often become the core organizations for other decision making by governmental (public) bodies. By 2014, ethnic, disability and gender NGOs were a worldwide phenomenon influencing the political and community changes from governments to roles of governance. 

Bergman, A. and Singer, G. (1996). The thinking behind new public policy. In: G. Singer, L. Powers, and A. Olson (Eds.), Redefining family support: Innovations in public-private relationships (pp. 435-460). Baltimore, MD: Paul H. Brookes. 

Berkowitz, B. (1999). Community and neighborhood organizations. In: J. Rappaport & E. Seidman (Eds.), Handbook of community psychology. (pp. 331-357). NY, NY: Kluwer Academic Press. 

Bersani, H. (1987). Site visit to Calvert County, Maryland ARC Family Support Services. Syracuse, NY: Syracuse University, Center on Human Policy, Research and Training Center on Community Integration. 

Cunningham, J.V. & Kotler, M. (1983). Building neighborhood organizations. Notre Dame and London: University of Notre Dame Press. 

Lutfiyya, Z.M. (1988, March). "Going for it": Life at the Gig Harbor Group Home. Syracuse, NY: Syracuse University, Center on Human Policy, Research and Training Center on Community Integration. 

Racino, J.A. (1991). Organizations in community living: Supporting people with disabilities.  Journal of Mental Health Administration, 18: 51-59. http://www.worldcat.org/oclc/4655631601

Racino, J. (1995). Community living for adults with developmental disabilities: A housing and support approach. JASH (Journal of the Association of Persons with Severe Handicaps), 20(4): 300-310.

Rubin, J. (1995). Community-based development organizations. In: R. L. Kemp, Economic development in local government. Jefferson, NC & London: McFarland and Co. 

Takahashi, L.M. & Smutny, G. (2001). Collaboration among small, community-based organizations in turbulent environments. Journal of Planning Education and Research, 21, 141-155. 

Transitional Living Services of Onondaga County. (1979). Oral history: Neighborhood and apartment complexes for people with psychiatric and developmental disabilities. Syracuse, NY: Author. 

Vineyard, S. (1981/1989). Beyond banquets, plaques, and pins: Creative ways to recognize volunteers. Downer's Grove, IL: Heritage Arts Publishing. 

Wandersman, A. & Florin, P. (1999). Citizen participation and community organizations. In: J. Rappaport & E. Seidman (Eds.), Handbook of community psychology. (pp, 247-272). NY, NY: Kluwer Academic/ Plenum Publishing.

In 2018, in the context of GLBT civil rights (ASPA, Denver 2018; Cuomo Administration, New York State, 2016), the context of "gender"(See, Rannveig Traustadottir on gender and disability, Scandinavian Journal of Disability Research), women have been highly successful in the political arenas and in changing the "composition of the workforces" in the US. The "auxiliary tracks" remain prominent as respected service tracks in organizations, while the leadership (top job, "breaking the glass ceiling"; women's political leadership; salary parity or "equal pay for equal work") often has changed by "race or gender"; analyses are still in process (Racino, forthcoming, this article, 2018). 

Community Support Services (pp. 24-25, modified)

      The field of mental health has often referred to all forms of community-based services, including large facilities in the local area, as community support or services (e.g., Anthony & Blanch, 1984).  The intellectual disabilities fields, in contrast, were successful in advocating for smaller, more "homelike", and "regular homes" (e.g., family dinners) (e.g., Ferguson, 1986) and community-based services (Walker, 1995). However, the major development efforts across the disability, human service, and community fields are to return to a more person-centered approach (with community infrastructure) to develop "true" community support (e.g., Bersani, 1989) and community support services (e.g., Ferguson, 1986) in the United States and worldwide. "In its ideal forms, community support is a promise and a hope for better communities, relationships, and public and private support of valued lives for all" (Racino, 2000; See, also Center on World Community, Cornell University, 1973). 

       In these contexts, community support represents the new generation of community life (e.g., Bogdan & Taylor, 1999 with Canadian doctoral student Lutfiyya, 1991), reflecting the diversity of communities, of peoples, and of persons/individuals. As an example of new approaches to community support influenced by the Americans with Disabilities Act of 1990, amended in 2008, are child care initiatives (Rab, Wood, & Taylor, 1995) based on the cooperation of businesses and governments. These initiatives incorporated in their fundamental design inclusion of children with diverse needs, including significant disabilities (e.g., Biklen, 1992). The program approaches most promoted were variations of service brokerage with support packages (often Canadian, or "new intermediaries"), which may vary by state and by individual or family (e.g., Salisbury, Dickey & Crawford, 1987). 

Anthony, W. & Blanch, A. (1984). Research on community support services: what we have learned. Psychosocial Rehabilitation Journal, 12, 55-81. 

Bersani, H. (1989). Family and "true" community support in the US: New developments. Community Integration Conferences, US. Syracuse, NY: Center on Human Policy, Syracuse University. 

Biklen, D. (1992). Schooling without labels: Parents, educators, and inclusive education. Philadelphia, PA: Temple University Press. 

Bogdan, R. & Taylor, S. (1999). Building stronger communities for all: About community participation for people with developmental disabilities. Syracuse, NY: Center on Human Policy, Syracuse University. 

Center on World Community. (1973). Formation of the Center on World Community through Annabel Taylor Hall, Interfaith Community. Ithaca, NY: Cornell University. 

Ferguson, D. (1986). Site visit report: Boise Group Homes (state of Idaho). Syracuse, NY: Syracuse University, Center on Human Policy, Community Integration. 

Knoll, J. & Racino, J. (1994). A field in search of a home: The need for support personnel to develop a distinct identity. In: V. Bradley, B. Blaney, & J. Ashbaugh (Eds.), Creating individual supports for people with developmental disabilities. Baltimore, MD: Paul H. Brookes. 

Lutfiyya, Z.M. (1991, April). Tony Santi and the bakery. In: Z. M. Lutfiyya (Ed.), Personal relationships and social networks: Facilitating the participation of individuals with disabilities in community life (pp. 1-14). Syracuse, NY: Syracuse University, Center on Human Policy, Research and Training Center on Community Integration. 

Meyers, M.K., Gornick, J.C., & Peck, L.T. (2001). Packaging support for low-income families: Policy variation across the United States. Journal of  Policy Analysis and Management, 20(3), 457-483. 

Mitchell, A., Stoney, C., & Difcher, H. (1997). Financing child care in the United States: An illustrative catalog of current strategies. Kansas City, MO and Philadelphia, PA: Ewing Marion Kaufman Foundation and Pew Charitable Trust. 

Mount, B., Beeman, P., & Ducharme, G. (1988). What are learning about bridgebuilding? A summary of dialogue between people seeking to build community for people with disabilities. Manchester, Ct: Communitas. 

O'Brien, J. & Lyle O'Brien, C. (1995). Building better communities: People with disabilities and their allies: Lessons from the USA. In: T. Philpot & L. Ward (Eds.), Values and visions: Changing ideas for people with learning difficulties. Oxford: Butterworth-Hennemann, Ltd.

Racino, J. (2000). Personnel preparation in disability and community life. Springfield, IL: Charles C. Thomas Publishers. 

Rab, V., Wood, K., & Taylor, J.M. (1995). Child care and the ADA: A handbook of inclusive programs. Baltimore, MD; Paul H. Brookes. 

Salisbury, S., Dickey, J., & Crawford, C. (1987).  Individual empowerment and social services accountability. Downsview, Ontario, Canada: The G. Allan Roehrer Institute. 

Walker, P. (1995). Community-based is not community: The social geography of disability. In: S. Taylor, R. Bogdan & Z.M. Lutfiyya (Eds.), The variety of community experiences (pp. 175-192). Baltimore, MD: Paul H. Brookes. 

        In 2018, the US Centers for Medicaid and Medicare authorized "person-centered projects"in the US, and the AARP Long Term Services and Supports (LTSS) included "Medicaid packages" in 2012 similar to the reports by Meyers, Gornick, and Peck in 2001 for low income families. Respite (Racino, 2014 from 1977, Exceptional Families Resources) and family caregiving continued as desired frameworks in the US versus child care approaches preferred by the middle class income Americans.

      "Individual and family support" is defined as a subcomponent of community services, includes family support, supportive living, personal assistance and supported employment (Braddock, Hemp et al, 2012). In states such as New York, separate legislation was passed in the 1980s to authorize family support and supported employment services; federal CSLA legislation authorized federal networks of "supportive living programs" already regulated in New York in the late 1970s (e.g., Smith 1990) and popular internationally (e.g., Mansell & Ericsson, 1996). Personal assistance services (PAS) was promulgated through the independent living networks in the mid-1980s (e.g., Brown, Heumann & Litvak, 1991) and was adapted for diverse populations (Racino & Litvak, 1999; Weissman, Kennedy & Litvak, 1991). 

       Education professions have moderately expanded licensure which included psychology and inclusive education. US Direct Support Workforces are described in Larson's chapter in Public Administration and Disability (Larson, 2014 in Racino, 2014) subsequent to a US President's Committee on Mental Retardation 1998 (foreword by PCMR member John F. Kennedy Jr.) report on Supporting the Frontline Workforce. These workforces, which are changing "ownership" in 2018 (e.g., Knoll et al, 1992; Knoll and O'Connor, doctoral student employees of the RRTC on Community Integration*, Syracuse University), are based in part on 1970s Executive NGO Offices in states such as New York which rely heavily on government funds. Recently, the American Society for Public Administration has supported Saluting the Public Service as a US international conference theme (ASPA, Atlanta, GA, 2017).

American Society for Public Administration. (2017, March 17-21). Saluting the public service: A bold and noble profession. ASPA Annual Conference Program (pp. 1-204). Atlanta, GA: ASPA at the Sheraton Atlanta Hotel. 

Braddock, D. , Hemp, R., et al. (2012). Figure 6: Trends in I/DD spending using six or fewer persons to define community services: FY 1977-2011. US State of the States in Intellectual and Developmental Disabilities. Denver, CO: University of Colorado, Coleman Institute and Department of Psychiatry. 

Brown, S. E., Heumann, J.E., & Litvak, S. (1991, September). Personal Assistance Services: A Guide to Action (2nd edition). Oakland, CA: The Research and Training Center on Public Policy in Independent Living at the World Institute on Disability in collaboration with InfoUse and the Western Consortium of Pubic Health.

Houser, A., Fox-Grage, W., & Ujavri, K. (2012). Across the states: Profiles of long term services and supports (9th edition). Washington, DC: AARP Pubic Policy Institute. 

Kennedy, J. F. Jr. (1998). Foreword. (iii-iv). Direct support professional initiative.  Opportunities for excellence: Supporting the frontline workforce. Washington, DC: President's Committee on Mental Retardation, Administration for Children and Families, US Department of Health and Human Services. 

Knoll, J., Covert, S., Osuch, R., O'Connor, S., Agosta, J., & Blaney, B. (1992). Supporting families: State family support efforts. In: V. Bradley, J. Knoll, & J. Agosta (Eds.), Emerging issues in family support (pp. 57-97). Washington, DC: AAMR. 

Larson, S., Sedlezky, L, Hewitt, A., Blakeway, C. (2014). Community support services workforces in the US. In: J. A Racino, Public Administration and Disability: Community Services Administration in the US. London, NY, NY: CRC Press, Francis and Taylor. 

Mansell, J. & Ericsson, K. (1996). Deinstitutionalization in Scandinavia, the US and Great Britain. London: Chapman & Hall. 

Racino, J. & Litvak, S. (1999). Part III: Personal assistance services.  In: J. Racino, Policy, Program Evaluation and Research in Disability: Community Support for All. London, NY, NY and Binghamton, NY: The Haworth Press.  http://www.bn.com

Racino, J. (2014).  Ch. 5: Family support, family studies, and community services. In: J. A Racino, Public Administration and Disability: Community Services Administration in the US (pp. 101-122). NY, NY and London: CRC Press, Francis and Taylor. 

Smith, G. (1990). Supportive living: New directions for persons with developmental disabilities. Alexandria, VA: National Association of State Mental Retardation Program Directors. 

Weissman, J., Kennedy, J., & Litvak, S. (Eds.). (1991). Personal perspectives on personal assistance services. Oakland, CA: Research and Training Center on Public Policy and Independent Living, World Institute on Disability, InfoUse and Western Public Health Consortium. 

*The Rehabilitation Research and Training Center on Community Integration at Syracuse University was a federally funded collaborative of Syracuse University, School of Education, University of Minnesota's Institute on Community Integration, University of Illinois-Chicago Human Development Department, the Arc-US and the International Association of Persons with Severe Handicaps.  The RRTCs are a comprehensive research, training and education program of the US Department of Education, National Institute on Disability Research and Rehabilitation. Principal Director: Steven J. Taylor; Research Director, Robert Bogdan; Deputy Director, Julie Ann Racino; then Associate for Information Dissemination, Bonnie Shoultz and Hank Bersani, Project Director.