A Community Engagement Process for Families with Children with Disabilities: Lessons in Leadership and Policy
- 677 Downloads
This article examines a community engagement process developed as part of leadership training for clinical trainees in the Oregon Leadership Education for Neurodevelopmental and Related Disabilities (LEND) Program in a complex community with diverse families who have children with disabilities. The goal is to examine the process and lessons learned for clinical trainees and their mentors from such a process. This is a case study conducted as community-engaged action research by participant-observers involved in the Cornelius community for the past 4 years. The authors include faculty members and clinical trainees of the Oregon LEND Program at the Oregon Health & Science University, families with children with disabilities in the community, and city officials. It is a critical case study in that it studied a community engagement process in one of the poorest communities in the region, with an unusually high population of children with disabilities, and in a community that is over half Latino residents. Lessons learned here can be helpful in a variety of settings. Community engagement forum, community engagement processes, a debriefing using a seven-element feasibility framework, and trainee evaluations are key elements. A community engagement forum is a meeting to which community members and stakeholders from pertinent agencies are invited. Community engagement processes used include a steering committee made up of, and guided by community members which meets on a regular basis to prioritize and carry out responses to problems. Trainee evaluations are based on a set of questions to trigger open-ended responses. Lessons learned are based on assessments of initial and long-term outcomes of the community engagement processes in which families, community members, local officials and LEND trainees and faculty participate as well as by trainee participant-observations, end of year evaluations and trainee debriefings at the time of the initial community assessment forum. The thesis that emerges is that community engagement processes can afford significant opportunities for clinicians in training to develop their leadership skills toward improving maternal and child health for minority families with children with disabilities while building capacity in families for advocacy and facilitating change in the community.
KeywordsCommunity evaluation Community engagement Maternal and child health Disabilities Leadership Policy Minority communities
- 1.Kaplan, G. A. (2009). The Poor Pay More–Poverty’s High Cost to Health. Robert Wood Johnson Foundation. [Available at: http://www.rwjf.org/files/research/thepoorpaymore2009.pdf accessed on 12/17/2009].
- 2.AHRQ (Agency for Healthcare Research and Quality). (2007). National Healthcare Disparities Report 2007. Rockville, MD: U.S. Department of Health and Human Services. [Available at: http://www.ahrq.gov/qual/nhdr07/nhdr07.pdf accessed on 6/23/2008].
- 3.Institute of Medicine. (2003). Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: Institute of Medicine of the National Academies.Google Scholar
- 4.Minkler, M. (1999). Community organizing and community building for health (2nd ed.). New Brunswick, NJ: Rutgers University Press.Google Scholar
- 5.CDC/ATSDR (Centers for Disease Control and Prevention) Committee on Community Engagement. (1997). Principles of Community Engagement. Atlanta, GA: CDC/PHPPO. [Available at: http://www.cdc.gov/phppo/pce/ accessed 03/26/2009.
- 6.Institute of Medicine. (1996). Healthy Communities: New Partnerships for the Future of Public Health. Stoto, M. A. et al. (Eds.), Washington, DC: Institute of Medicine (IOM), The National Academies Press.Google Scholar
- 7.Freire, P. (1970). Pedagogy of the oppressed. New York: Seabury Press.Google Scholar
- 8.Waffle, D., et al. (2010). Community Engagement Comes to Mean a Commitment. PM Magazine, January/February 2010; 92 (1). [Available at: http://icma.org/pm/9201/public/pmplus3.cfm?author=David%20Waffle%2C%20Claudia%20Mar%C3%ADa%20Vargas%2C%20Phillip%20Cooper%2C%20and%20Dick%20Reynolds&title=Community%20Engagement%20Comes%20to%20Mean%20a%20Commitment accessed on 02/04/2010].
- 9.HRSA (US Department of Health and Human Services). (2010). LEND Factsheet. HRSA. [Available at: http://mchb.hrsa.gov/training/documents/fs/lend_factsheet-rev1-14.pdf accessed on: 06/29/2010].
- 10.Ritas, C. (2003). Speaking Truth, Creating Power: A Guide to Policy Work for Community-Based Participatory Research Practitioners. Community-Campus Partnership for Health. [Available at: http://depts.washington.edu/ccph/pdf_files//Ritas.pdf accessed on 02/08/2010].
- 11.Koch, T., et al. (2006). Participatory action research in health care. Oxford, UK: Blackwell Publishers.Google Scholar
- 13.Haque, N., et al. (2009). Community Mapping: Lived Experiences of Newcomer Residents. Toronto, Canada: The St. James Town (SJT) Institute. [Available at: http://sjtinitiative.com/wp-content/uploads/2009/02/sjtcommunity-mapping_part-1.pdf accessed on 12/17/2009].
- 14.Stake, R. E. (1995). The art of case study research. Thousand Oaks, CA: Sage Publications.Google Scholar
- 15.Eckstein, H. (1975). Case study and theory in political science. In F. I. Greenstein & N. W. Polsy (Eds.), Handbook of political science (Vol. 7, pp. 94–137). Reading, MA: Addison-Wesley.Google Scholar
- 16.Yoder, J., & DiVenere, N. (2004). Family-centered and family’s perspective: Traumatic brain injury, cancer, and co-morbid learning challenges. In C. M. Vargas & P. A. Prelock (Eds.), Caring for children with neurodevelopmental disabilities and their families: An innovative approach to interdisciplinary practice (pp. 31–66). Mahwah, NJ: Lawrence Erlbaum Associates, Inc., Publishers.Google Scholar
- 17.Yoder, J., & Burchard, S. (2004). Parent to parent practicum to learn about the family perspective: Down syndrome and celiac disease. In C. M. Vargas & P. A. Prelock (Eds.), Caring for children with neurodevelopmental disabilities and their families: An innovative approach to interdisciplinary practice (pp. 245–272). Mahwah, NJ: Lawrence Erlbaum Associates, Inc., Publishers.Google Scholar
- 18.Vargas, C. M., & Prelock, P. A. (Eds.). (2004). Caring for children with neurodevelopmental disabilities, their families: An innovative approach to interdisciplinary practice. Mahwah, NJ: Lawrence Erlbaum Associates, Inc., Publishers.Google Scholar
- 19.Cooper, P. J., & Vargas, C. M. (2008). Sustainable development in crisis conditions: challenges of war, terrorism, and civil disorder. Lanham, MD: Roman & Littlefield Publishers.Google Scholar
- 20.EPA (Environmental Protection Agency), Office of Research and Development (8101R). (2007). A Decade of Children’s Environmental Health. Author. [Available at: http://es.epa.gov/ncer/publications/research_results_synthesis/ceh_report_508.pdf accessed: 6/23/2008].
- 21.WHO (World Health Organization) Wilkinson, R., Marmot, M., (Eds.). (2003). The Social Determinants of Health: The Solid Facts, 2nd Edition. Denmark: Author. [Available online at: http://www.euro.who.int/document/e81384.pdf accessed 12/11/2009].
- 22.Cooper, P. J. (1988). Hard judicial choices: Federal district court judges and state and local officials. New York, NY: Oxford University Press.Google Scholar
- 23.Ngandu, J., & Leal Gianfortoni, E. (2006). Sin Provecho: Latinos and Food Insecurity. In NCLR, Nutrition Report, 2006. [Available at: http://graphics8.nytimes.com/images/blogs/thelede/posts/La_Raza_Summ.pdf accessed 04/04/2009].
- 24.Cooper, P. J., & Vargas, C. M. (2004). Implementing sustainable development: From global policy to local action. Lanham, MD: Rowman & Littlefield Publishers.Google Scholar
- 25.Institute of Medicine (IOM). (2004). From neurons to neighborhood: The Science of early childhood development. Washington, DC: The National Academies Press.Google Scholar
- 26.City of Cleburne, Texas v. Cleburne Living Center (1985), 473 U.S. 432.Google Scholar
- 27.Bd. of Trustees of the University of Alabama v. Garrett (2001), 531 U.S. 356.Google Scholar
- 28.Drum, C. E., et al. (2009). The oregon community engagement initiative: A multi-case study of a disability coalition development process. Community Development: Journal of the Community Development Society, 40, 1–17.Google Scholar
- 30.Reid, N. J. (2000). How people power brings sustainable benefits to communities: USDA Rural Development Office of Community Development. USDA. [Available: http://www.rurdev.usda.gov/rbs/ezec/Pubs/commparticrept.pdf accessed 01/11/2010].
- 31.Coalition for a Livable Future. (2009). Regional equity atlas. Author. [Available at: http://www.equityatlas.org/chapters/NeighborhoodTable.pdf accessed on 04/06/2009].
- 32.US Census Bureau. (2008). 2008 QuickFacts. Author. [Available at: http://quickfacts.census.gov/qfd/states/41000.html accessed on 06/11/2010].
- 33.Oregon Housing and Community Services. (2008). Report on Poverty–2008. Oregon Housing and Community Services, Salem: OR.Google Scholar
- 34.U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2008). The National Survey of Children with Special Health Care Needs Chartbook 2005–2006. Rockville, Maryland: U.S. Department of Health and Human Services. [Available at http://mchb.hrsa.gov/cshcn05/MI/NSCSHCN.pdf accessed on 07/09/2010].
- 36.Drum, C. E., et al. (2007). Community Action Guide, Version 2.0. Portland OR: Center on Community Accessibility, Oregon Institute on Disability and Development, Child Development and Rehabilitation Center, Oregon Health & Science University.Google Scholar
- 37.MDH (Minnesota Department of Health). (2002). Strategies for Public Health: A Compendium of Ideas, Experience and Research from Minnesota’s Public Health Professionals, Volume 2. Minnesota Department of Health Division of Community Health. [Available at: http://www.health.state.mn.us/strategies/ accessed on: 05/10/2010].
- 38.Liberty, R. (2007). Rolling a mile in another man’s wheels, Robert Liberty, METRO Council District 6 News, Portland, OR.Google Scholar
- 39.Vargas, C. M., et al. (2008). Day of the Child Celebration, Cornelius, Oregon: “Equal Rights, Different Abilities. LENDLinks.Google Scholar
- 40.Cooper, P. J., & Dennis, R. (2004). Building capacity in law, policy, and leadership: Public administration in support of families and clinicians. In C. M. Vargas & P. A. Prelock (Eds.), Caring for children with neurodevelopmental disabilities and their families: An innovative approach to interdisciplinary practice (pp. 303–333). Mahwah, NJ: Lawrence Erlbaum Associates, Inc., Publishers.Google Scholar