State of the Rural Health and Disability Science

1. State of the Rural Health and Disability Science

2. Overview • A Story • Rural disability and health issues • Health promotion • Expanded the purview of our work

3. Sanders County • Family of 3 adults • Power wheelchair user • Sibling with significant developmental disability • Adult with mental illness • Living Independently • Few needs for support

4. Rural Health • Managing funding loss • Medicare policy • Attracting qualified personnel • Maintaining Hospitals Clark Fork Valley Community Hospital Sanders County, Montana

5. Disability and Rural Health • People with disabilities face all of the same generic rural health challenges • Additional Challenges • Lack of specialists • Lack of accessible medical diagnostic technology • Transportation for services • “Narrower margin of health” (Pope & Tarlov, 1991)

6. Health Promotion • Health promotion can help address the narrower margin of health • Health Psychology and Behavioral Medicine • 2000-2010 Decade of Behavior

7. The Role of the Environment • Individual vs. Environment • Disability results from the interaction of person and environmental factors. • International Classification of Function, Disability and Health (WHO, 2001)

8. Living Well with a Disability • Living Well Editions 1 - 3 • Original pilot – 1990 • Randomized trial 1998 • Training program 2000 • Fourth Edition 2010 • Peer support and self-advocacy • Community Activated Living Well • Participatory Curriculum Development

9. Current RTC Health Projects • Peer Support for Mental Health Symptoms • Consumer Activated Self-Management • Participatory Curriculum Development

10. Policy Impacts • New Freedom Initiative named Living Well as a national program of significance to be emulated. • National Center on Birth Defects and Developmental Disabilities names Living Well as an evidence-based practice • Aging and Disability Resource Centers include Living Well • Montana Medicaid recently included health promotion as a reimbursable services

11. Community-Level Interventions • National trends toward community interventions • Our experience and observations • The challenge of community level interventions

12. Vincent Francisco Dr. Vincent Francisco is the Director of Graduate Study in the Department of Public Health Education at the University of North Carolina at Greensboro

13. Rural Health and Disability: Potential Contributions from Public Health Vincent T Francisco and Craig Ravesloot Presentation for the State of the Science: Toward a New Paradigm for Rural America Conference, 20 April 2012.

14. Intro and Background • Rural people are less healthy than urban people (Institute of Medicine, 2005) • Rural environments have fewer healthcare resources to address health problems and to promote health of rural populations • The cause of this disparity goes well beyond access to healthcare, the focus of most rural health researchers and advocates

15. What Public Health Brings to the Table • Mission of Public Health – “Assuring the conditions under which health can occur” • Focus on access to care and on primary prevention • Potentially helpful data focusing on population outcomes, rather than individual deficits • Value of democratic inclusiveness • Focus on improvement of broader environmental and social conditions

16. The Ecology of Rural Health Several theoretical approaches offer some helpful framing, especially: • Theories of human development • Theories of behavioral influences • Theories of systems and related outcomes

17. Ecological Model of Rural Health

18. Structural/Behavioral Model of Development Facilitative Optimal Developmental Outcome • Personal Variables • Biology • History Non-Facilitative • Environmental Variables • Social • Physical Facilitative (adapted from Horowitz, 1987)

19. Socio-ecologic Model of Human Development (Bronfenbrenner, from McLaren et al., 2005)

20. Socio-Ecological Model in PH • Intrapersonal factors—characteristics of the individual such as knowledge, attitudes, behavior, self concept, skills, etc. This includes the developmental history of the individual. • Interpersonal processes and primary groups—formal and informal social network and social support systems including the family, work group, and friendship networks. • Institutional factors—social institutions with organizational characteristics. And formal (and informal) rules and regulations for operation. • Community factors—relationships among organizations, institutions. And informal networks within defined boundaries. • Public policy—local, state, and national laws and policies. (from McLeroy et al., 1988)

21. BEM Diagram of Two Hierarchical Systems that Combined Help Explain Both Individual and Cultural Practices Social/Cultural Level Nationality Culture Specific Community Level Policies Laws Media External Influences Local Level Clinical Services Built and Social Environment Individual Level Normative Group Physical Context Consequences Behavior Earlier Time Later Time Internal Influences Learning History Physiology Anatomy Genome

22. Theory of Triadic Influence Environmental Stream Personal Stream Social Stream Levels of Causation Biological/Nature Nurture/Cultural Ultimate Underlying Causes Social Situation Biology/Personality Cultural Environment Social/Personal Nexus Sense of Self/Control Social Competence Interpersonal Bonding Others’ Behs and Atts Interactions w/ SocInst’s Information/Opportunities Distal Predisposing Influences Evaluations and Expectations Self Determination Skills: Social + General Motivation to Comply Perceived Norms Values/Evaluations Knowledge/Expectancies Affect and Cognitions Self-Efficacy, Behavioral Control Social Normative Beliefs Attitudes Toward the Behavior Proximal Immediate Predictors Decisions Decisions/Intentions Experiences Trial Behaviors and Experiences Behavior Related Behaviors

23. Synergy of Efforts and Syndemics • Syndemics is the interaction of multiple epidemics • Can be behavioral problems, not just epidemiological problems • Offers an approach to framing the problem outside of “blaming the victims”

24. Health Capacity to Act Living Conditions Minimum Boundary for Syndemic Thinking • Two or more afflictions, interacting synergistically, contributing to excess burden of disease in a population. Adapted from a Syndemics presentation by Bobby Milstein, PhD (CDC Office of the Director)

25. Systems Science Event Oriented View Decisions Systems View Side Goals Effects Environment Goals of Others Actions of Others Basic Problem Solving Orientations Sterman J. Business dynamics: systems thinking and modeling for a complex world. Boston, MA: Irwin McGraw-Hill, 2000. Adapted from a Syndemics presentation by Bobby Milstein, PhD (CDC Office of the Director)

26. Systems Improvement for Health Outcomes • Community Engagement in problem definition and solution development • Integration of a systems improvement approach including feedback mechanisms related to ongoing improvement • Resulting in a few big systems improvements, and a lot of smaller ones

27. Model for Health Promotion and Community Development(Fawcett et al., 2000) Community Context & Planning Community Level Outcomes Community Action & Intervention Risk & Major Behavior Change Community & Systems Change

28. 7 Factors Related to Success • Targeted Vision and Mission • Leadership (charismatic and distributive) • Action Planning • Capacity Building • Paid Staff • Documentation and Feedback • Making Outcome Matter

29. Rural Environment and Disability Rural health issues are exacerbated by several factors, including: • Lack of mobility and physical access to services • Fewer services available due to economic factors • Increased negative effects due to marginalization and lack of communication and engagement in decision-making

30. Case Study 1 – North Carolina • 4 counties in North Carolina as a pilot project • Focus on the needs of families of children with special health care needs (defined broadly) • Input from the families and the broader community resulted in several hundred potential systems improvements across the 4 counties • Most improvements were sought in transportation, communications, access to services, availability of services, and availability of support services for the families and children

31. Case Study 1 (cont.) • 3 years of implementation resulted in over 120 systems improvements across the 4 counties (low of 20 and high of over 60 within individual counties) • Many service providers are adding advisory boards to their agencies that include the families • Plans are underway to extend the planning and collective action to sectors not already covered

32. Case Study 2 – Rural South Carolina • Adaptation and adoption of “Living Well with a Disability” program • Phase 1: meeting with stakeholders • Phase 2: relationship building • Phase 3: working group established to adapt curriculum • Phase 4: self-assessment of program effectiveness

33. Case Study 2 (cont.) • Program materials were used beyond the initial program period and commitments made were honored • One DSB consumer moved into his own apartment and participated with other DRC staff and clients in the “Medicaid Matters” rally in Washington, DC, June 2010 • Inclusion and participation of consumers can enhance individual behavior and system behavior that promotes health of community members • Inclusion of DSB clients in the development of the program structure and materials was a key to the program’s success

34. Conclusions • People with disabilities face substantial challenges to maintaining health status. • With fewer economic and other social resources to draw on, they are at a distinct disadvantage for health behavior change and healthcare access despite their greater needs for support. • Behavioral syndemics emerge that put individuals at risk for secondary conditions that require even greater access to specialty medical care. • Novel solutions to these complex health problems that affect all rural people can emerge through a community systems approach. • Organizing across public and private health sectors to create opportunities for community participation including health promotion holds promise for addressing these substantial problems and for meeting the needs of people with disabilities.

35. Conclusions (cont.) • Individuals are both responsible for their health and highly influenced by the environment in which they live. • As long as community participation in rural communities is limited by physical, economic, and social structures, the health of people with disabilities will be at risk. • Community interventions that level the playing field for all community members will encourage both individual- and community-level behavior that improves health for all people.

36. Recommendations • Include disability screening questions and county of residence on all health related national data collection efforts to allow analysis of health status between the general population, people with disabilities, and rural people with disabilities. • Conduct epidemiological research that examines the relationship between rural residence, community participation, and health outcomes for people with disabilities. • Train rural healthcare providers to provide Self-Management Support by networking with community health resources including health promotion and disease prevention activities. • Conduct demonstration projects of community level health planning that involve people with disabilities using participatory research methods.

37. Discussion Questions? Comments?