2. Designing and Using Cloud – Based Interactive Patient Experience Surveys to Assess the Effectiveness of Accessible Telecare Strategies for People with Intellectual and Developmental Disabilities David O’Hara, Ph.D Westchester Institute for Human Development AHRQ Meeting September 10, 2012

3. Westchester Institute for Human Development One of 67 university centers for excellence in disabilities education, research, and service affiliated with New York Medical College Comprehensive health care clinic for 4500 adults with I/DD: primary & specialty medical care, behavioral health, dental and rehabilitation services Medicaid service coordination – health home Long term care planning, consolidated services and supports – fiscal agent Applied research – accessible models of telecare, direct survey response design for evaluation of patient-centered medical home for people with cognitive disabilities and to promote self- direction and choice in community living options

4. Tele-Health: Existing and Emerging Technology Platforms The User Interface is the Key (Software)

5. Type 2 Diabetes and People with I/DD Data from 2006 Medical Expenditures Panel Survey –Health status of working age adults with cognitive limitations compared with adults with no disability –Adults with I/DD significantly higher prevalence 19.4% vs 3.8% –Also significantly higher prevalence 6 other chronic health conditions –Adults with I/DD and diabetes significantly more likely to have 4 or more chronic illnesses –Reichard & Stolzle (June, 2011). Diabetes among adults with cognitive limitations compared to individuals with no cognitive disabilities. Intellectual and Developmental Disabilities 49 (3), p 141-154.

6. The Wagner Chronic Care Model

7. Health Literacy Institute of Medicine workshop reports: –Promoting health literacy to encourage prevention and wellness (November 1, 2011) Research to find better pathways to improved health literacy and better health –Innovations in health literacy (March 10, 2011) Health literacy and health disparities, better use of IT improve health literacy –Overall nearly nine out of 10 adults have difficulty using health information to make proper health decisions

8. HealthCare Manager – Personalized Health Plan on iPad

9. Cognitively Accessible Telehealth Portal - iPad/Android

13. Cognitively Accessible Telehealth Portal – Desktop/Touchsmart

15. Learning Library Session

16. Improving Oral Health

17. Janice after you eat every meal you need to go brush your teeth and you need to get your brush and your toothpaste and go to the bathroom

18. Self-Directed Consumer Surveys Self-directed, survey tools, such as consumer satisfaction surveys, using multi-modal presentation and accessible design can increase independence and reduce staff time interviewing and entering/ aggregating data. ATLAS – Accessible Testing Learning & Assessment System

19. CAHPS Clinician and Group Survey

21. Health Quest An accessible survey tools to enable individuals with cognitive disabilities to become active participants in their own health and wellness.

22. Access to Cloud-Based Data

23. Survey Response Summary

24. Survey Response Detail

25. Individual Responses

26. Future Projects Design and implement an alternative patient- centered medical home experience survey directly accessible for people with cognitive and other disabilities Develop and deploy accessible health education, health promotion and wellness resources through currently available EMR’s Design and administer self-determination surveys to up to 10,000 individuals with I/DD who will be migrating to managed long term care community living options and supports in New York State