Identifying, Prioritizing, and Assessing Chronic Disease Self-Management Programs in Florida Miten A. Patel, M.P.H., Claudia Tamayo-Friedel, M.P.H. University of Florida College of Public Health and Health Professions Florida Disability and Health Program Background Methods References Summary of Critical Literature: According to the Americans with Disabilities Act (ADA), an individual with a disability “Is a person who: (1) has a physical or mental impairment that substantially limits one or more major life activities; or (2) has a record of such an impairment; or (3) is regarded as having such an impairment.”1 In 2010, 23.9% of adult Floridians, approximately 4.5 of its 18.8 million residents, reported having a disability, an estimate notably higher than the national rate of 22%.2,3 However, disability in Florida will increase disproportionately due to an aging population.4 As such, it is imperative to address disparities between persons with and without disabilities, including inequities in utilization of health care services, health behaviors, and physical and mental health outcomes. For instance, “Adults with disabilities have a 400% elevated risk of developing Type II Diabetes.”5 Moreover, “People with disabilities encounter structural barriers to health care, including inadequate transportation, lack of architectural accessibility in the facilities and offices of health care providers, and lack of accessible exam and diagnostic equipment.”6 Because “Information is not readily available to state public health agencies or others interested in tracking access to care and the quality of care received by people with disabilities,” studying referral processes and accessibility features of facilities that offer chronic disease self-management programs will provide surveillance data to promote utilization of such health care services among all Floridians.6 Objectives: The specific aims of this special project are two-fold: Study current referral processes to chronic disease self-management programs in Florida Assess accessibility features of facilities that provide chronic disease self-management programs. According to the ADA, accessibility “Refers to a site, facility, work environment, service, or program that is easy to approach, enter, operate, participate in, and/or use safely and with dignity by a person with a disability.”7 Rationale and/or Need for the Project: The data will later be used to establish baselines in order to assess changes over time in referral numbers, sources, and accessibility features. The data will provide understanding of what organizations are referring, who is not referring but should be, and methods being used to refer individuals to such programs. Furthermore, studying referral processes and accessibility features of facilities that offer chronic disease self-management programs aligns with the Florida Disability and Health Program’s mission and its surveillance activities to improve health outcomes of all Floridians by promoting access to and utilization of such health care services. In accordance with the Chronic Disease State Health Improvement Plan (CDSHIP), the Bureau of Chronic Disease Prevention and Health Promotion provided a list of facilities that offered chronic disease self-management programs throughout Florida. This list was consolidated and categorized by facilities that provided diabetes self-management education and by facilities that offered self-management services for “other chronic diseases” such as arthritis and asthma. Review of critical literature related to referral processes and accessibility features and adaptations to visitability questions from the 2011 Florida Behavioral Risk Factor Surveillance Survey (BRFSS) and Florida County Health Department Survey resulted in a survey of twenty questions, 5 about referral processes and 10 regarding accessibility features. Visitability questions were rephrased to mention “facility” rather than “home” as they were originally designed to assess accessibility features of homes across Florida. The survey was created and disseminated electronically via Qualtrics to each facility’s program manager between January 2013 and March 2013. 1Wisconsin Department of Health Services. (2010, July 12). The Americans with Disabilities Act (ADA) and People with Physical Disabilities. Retrieved April 1, 2013, from How Does ADA Define Disability?: http://www.dhs.wisconsin.gov/disabilities/physical/definition.htm   2Centers for Disease Control and Prevention. (2011, March 23). Disability and Health Data System (DHDS). Retrieved April 1, 2013, from Florida Demographic Overview State Profile: http://dhds.cdc.gov/profiles/profile?profileId=8&geoTypeId=1&geoIds=12 3U.S. Census Bureau. (2013, March 14). State & County QuickFacts. Retrieved April 1, 2013, from http://quickfacts.census.gov/qfd/states/12000.html 4Centers for Disease Control and Prevention. (2011, March 23). Disability and Health Data System (DHDS). Retrieved April 1, 2013, from Disability Data: Interactive Map of Disability Status: http://dhds.cdc.gov/dataviews/report?reportId=1&viewId=792&geoReportId=2184&geoId=1&geoSubsetId=&z=1 5Yee, S. (2011, August). Health and Health Care Disparities Among People with Disabilities. (Disability Rights Education & Defense Fund) Retrieved April 1, 2013, from http://dredf.org/healthcare/Health-and-Health-Care-Disparities-Among-People-with-Disabilities.pdf  6National Council on Disability. (2009, September 30). The Current State of Health Care for People with Disabilities. Retrieved April 1, 2013, from http://www.ncd.gov/publications/2009/Sept302009#The Americans 7Job Accommodation Network. (n.d.). The Americans with Disabilities Act Glossary of Terms. Retrieved April 1, 2013, from http://askjan.org/links/adaglossary.htm Results The Florida Department of Health provided a list of 192 facilities that offer chronic disease self-management programs (n=192). 175 provided diabetes self-management education 17 offered “other chronic disease” self-management services Although 34 individuals started the survey, 18 surveys were completed leading to a response rate of 9.38%. 96% of respondents completed the survey in its entirety. Surveillance data from 12 facilities that offered diabetes self-management education and 6 that offered self-management services for “other chronic diseases” were collected and analyzed. Retrieved from the Disability and Health Data System (DHDS) Acknowledgments I am indebted to Claudia Tamayo-Friedel, Dr. Allyson Hall, the staff of the Florida Department of Health’s Bureau of Chronic Disease Prevention and Health Promotion, and the faculty and staff of the University of Florida College of Public Health and Health Professions for their support and guidance. I am grateful to the Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD) for funding this research. Most importantly, I would like to thank the participants who were involved in this research study. Discussion Implications Disability prevalence will increase disproportionately with an aging population.4 As such, it is imperative to continue to conduct surveillance of referral processes and accessibility features in order to promote access to health care services and improved health outcomes for all individuals regardless of disability status. Because limited surveillance data exits regarding referral processes and accessibility features, the availability of such data can influence policy and program planning in Florida. Furthermore, these data can raise awareness among health care providers and builders in the State of the relationship between the built environment and health, support accessible design according to ADA standards, and building for people of all abilities. Correspondence People with disabilities were primarily referred to chronic disease self-management programs via recommendations from general practice physicians and self-referrals. Patients/clients were informed of such programs by their physicians, through personal inquiry, and by health promotional or outreach activities conducted by the facility. All facilities had main entrances that were accessible by individuals with disabilities. Furthermore, doorways and restrooms on the main floor, position of door handles, and design of door handles were relatively accessible. However, Braille signage to the right of doorways and appropriate flushing mechanisms in restrooms were not found to be in high proportions as other accessibility features within facilities that offer chronic disease self-management programs according to ADA standards on accessible design. This study’s greatest strengths are that it is relatively inexpensive and straightforward to conduct. However, it is limited by its low response rate. Consequently, the study can be more generalizable with a higher response rate and a larger sample size. Please address all correspondence to: Miten A. Patel, MPH University of Florida College of Public Health & Health Professions Department of Health Services Research, Management & Policy Telephone: (772) 341-7286 E-mail: mitenp@ufl.edu or mitenapatel@gmail.com This study was approved by the University of Florida’s Institutional Review Board (IRB) 02