1. Perceptions of Health and Disability Among Service Providers in Alabama Brian F. Geiger, Stephen L. Firsing III & Gary Edwards University of Alabama at Birmingham United Cerebral Palsy of Greater Birmingham American Association for Health Education, Research Coordinating Board Indianapolis, IN March 18, 2010 Funded by the Alabama Council on Developmental Disabilities & the National Network of Libraries of Medicine

2. 18% of those with disabilities, versus 11% of those without disabilities went for at least one year without medical care 2004 National Organization on Disability/ Harris Survey of Americans with Disabilities USDHHS goal: promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population USDHHS, Healthy People 2010 2 Background to the Project

3. AHRQ (2004) - health disparities disproportionately affect minority groups, people with disabilities, those with limited income and education, and rural residents Appleyard (2003) - “individuals with cognitive disabilities have difficulty using the Internet even after they have gained physical access.” Grants from ACDD and the National Network of Libraries of Medicine (NN/LM) funded a needs assessment and educational activities to increase access to health information and services 3 Background to the Project

4. HealthyMe HealthyU ©2009 UCPGB Three aims: 1.To educate the medical community regarding how to modify equipment and facilities to be more accessible 2.To educate families/caregivers, consumers, and case managers on personal health management 3.To educate professionals, consumers and families to access and utilize digital resources for health information 4

5. Project Activities Composed (2) working groups to guide project activities including service providers, consumers, family and other caregivers Designed needs assessments for 4 audiences Administered needs assessment in multiple formats and languages Summarized results and prioritized content of training modules Developed scripts for modules and solicited peer review 5

6. Researchers and working group members selected items from HINTS (2007), composed new items, revised content following review, translated into Spanish, offered printed and online formats 6 Item Category Consumers/ Caregivers Service Providers/ Students Demographics6 consumer;11 caregiver6 provider; 5 student Disability Characteristics1311 Internet Use3124 Health Care Access & Use161 Quality of Care2410 Access to Information1819 Training NeedsNA8 Number of Survey Items by Item Type Review of Assessment

7. Statewide dissemination through agency and individual contacts, professional meetings, & news release Individually administered by working group members and graduate students Caregivers reported health information and service needs of young consumers and those with severe communication disorders 7 Review of Assessment

8. Family and other Caregivers (n=277) Individuals with Disabilities (n=113) Health Professions Students (n=570) Clinical Service Providers (n=145) – 32% primary care MDs; 19% PT, OT, SLP – 61% female – 89% white; 8% black – Mean 15.5 yrs. providing services to pts. with disabilities – 56% report treating >50 patients with disabilities annually 8 Results

9. 99% looked for information about health/medical topics from any source 1 st preference to obtain information about health/medical topics – 61% most often chose the Internet – 12% chose a medical library or a reference text – 9% selected a peer-reviewed journal 55% said most recent searched for health information was for someone else 9 Service Providers Selected Results

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14. Anticipated or encountered obstacles when treating individuals with disabilities ( n = 62 ) Responses: funding and insurance issues (n=15) communication with patient or caregiver (n=14) patient following treatment recommendations (n=12) 14 Obstacles or Challenges

15. 161 responses 1)Accessing resources and coordinating health services (n=45) 2)Gen. training on disabilities, evaluating patients & accommodations for individual needs (n=42) 3)Communication among provider, patient, family (n=29) 15 Priority Training Needs

16. Using Data to Address Needs Developed (6) YouTube training modules featuring clinicians, consumers, medical librarian, radio announcer: 1.Preparing Patients with Disabilities for a Successful Office Visit 2.Disability Etiquette 3.Practice Accommodations for Patients with Disabilities 4.Staying Healthy between Doctor Visits 5.Using the Internet to Learn about Your Health 6.Preparing to Visit Your Healthcare Provider Field testing and dissemination Assisting faculty of professional schools to use during preservice education 16

17. Overly ambitious timeline from funders to achieve multiple goals Limited generalizability - majority of student respondents were enrolled in health professions degree programs at UAB Content validity only Few online Spanish language webpages for health information 17 Study Limitations

18. 18 Healthy Me Healthy U © Partnerships