1. Real Choices Systems Change Grants for Community Living Beth Hudnall Stamm, PhD, Neill F Piland, DrPH, Debra Larsen, PhD, Ann D Kirkwood, Russell C Spearman, MEd, Stacy Specht, MPA & Donna Parker, AA Institute of Rural Health at Idaho State University Idaho Real Choice Systems Change (2001-2004) & Money Follows The Person (2003-2006) Grants

2. Project Goals The goal of this project is to create enduring systems change in community long-term services and supports. The plan for change is in two phases and two separate grants 18-P-91537; 2001-2004 and 11-P-92045; 2003- 2006 that overlap by one year Phase 1 a statewide anti-stigma campaign and a needs and resources assessment including an economic analysis of the current system, culminating in a plan for change Phase 2 Community development project and effectiveness study to test and refine the plan

3. Improving Community Integrated Services and Outcomes Statewide Assessment of Needs and Resources (2001-2003) to develop a baseline and benchmarks of needs and resources for people of any age with disabilities and long-term illnesses in the state of Idaho Anti-Stigma Campaign (2001-2004) designed to reduce stigma thereby paving the way for more successful community integration, a Economic Analysis of the current Medicaid system (2001-2004) to maximize appropriate funding strategies and leveraging of available funds Community Development Project (2003-2005) to examine the political and fiscal feasibility of addressing access to resources for living by approaching it as a community development problem, not a health care problem Effectiveness study (2003-2005)to determine the quality and value of the plan derived. The final product will be a plan for statewide implementation that has more integration of services, consumer and stakeholder input, and a monitoring system for continuous quality improvement.

4. Key Activities of The Two Studies 2001-20022002-20032003-20042004-20052005-2006 Real Choices Start-up, Needs & resources Needs & resources, Anti-stigma Community development, Effectiveness study Money Follows the Person Community development, effectiveness study Finalize plan, Close out

5. Methodology Grant Goal 1: Anti Stigma Needs and Resources Goal 2: Economic Analysis Goal 3: Community Development Goal 4: Effectiveness Study Real Choices Study 2001- 2004  Develop Campaign Pre-test Launch campaign for one year (2003-2004)  Refine needs & resources measure  Collect needs & resources info Collate, analyze needs & resources  Identify variables Collect data for system definitions Complete plan for realignment of funds Test plan  Identify community  Implement community development project  Launch effectiveness study (small numbers, without comparison group) Money Follows the Person Study 2003-2006  Post-test Continue Campaign 2nd year r (2004- 2005) 2nd Post-test  Use existing baseline information  Test plan with effectiveness study  Identify community  Implement community development project  Expand effectiveness study (more participants, comparison group) Follow-up on 1 st year people

6. Target Population Statewide project, with a regional component, targeting people of all ages with physical, mental, developmental, or age-related disabilities and long- term care needs.

7. Types of Disabilities Represented by N&R Respondents 485 people reported 636 disabilities

8. Age at Onset birth 28% childhood 22% adult 39% older adult 11% Age of Onset for Initial Disability Mean onset 26 yrs (27 SD) Age of Onset for 2 nd Disability Mean onset 42 yrs (23 SD) Current Age of Participants Mean 40 yrs (SD 27) Most common age = 40 yrs Youngest age = 0 yrs Oldest age = 97 yrs

9. Goal 1: Anti-Stigma Campaign Advisory Work Group to support the anti- stigma campaign (2001-2003; 2004-2005) State-wide campaign 2003-2004 Pre and post-test state-wide random phone survey of values, attitudes (2003, 2004) Stepped up regional anti-stigma campaign through 2005 with second post-test

10. N&R: Experienced Discrimination

11. Goal 2: Economic Analysis Continue Economic Analysis of the current Medicaid system to identify ways to reapportion and maximize funding Conduct statistical, economic, and policy analysis of the first all available data

12. Community Development Project People with disabilities do not have a chance to share in resources equally with non-PWDs Creating a hospitable climate for community integration is critical Refine Coalition plan based on first Real Choices Systems Change study and input from that Coalition Identify community(ies) and establish a cooperative agreement for community development Convene Coalition(s) Study how selected community(ies) develop resources across life areas Intensify anti-stigma campaign in community development town(s).

13. N&R: Annual Household Income

14. N&R Work Status

15. Goal 3: Community Integration Effectiveness Study PWD experience lower quality of life than their non-PWD peers Continue effectiveness study from 2003 Recruit additional participants for effectiveness study Continue or recruit intervention community Recruit a comparison community Conduct a 1 year follow-up on participants from the first study

16. Quality of Life Total Household Income More than half of the respondents (54.5%) reported total household income of less than $25,000 per year. Most Commonly Reported = $15,000- 24,000 (20%) Just over one third of respondents reported total household income of <$15,000 per year (34.5%)

17. Disability Caused Life Status Change

18. Disability Has Caused Additional Health Problems 12%

19. Participant Involvement Individuals enrolled in the study will actively direct actions relating to their community integration and will provide feedback as to needs and preferences.

20. Participant Involvement Individuals enrolled in the effectiveness study will actively direct actions relating to their community integration and will provide feedback as to needs and preferences

21. Evaluation of Grant Completion Anti-stigma campaign- Evaluation based on pre- and post-campaign surveys Economic Analysis – evaluation based on existence of document, recommendations & issues addressed. Community Development Project- Evaluation based on reports, recommendations and need/resources addressed Effectiveness Study- Evaluation based on regular survey intervals to determine if the project meets the needs of the participant, and satisfaction with expected outcomes

22. Refining the Process… Federal Requirements Participant presentations Other people with disabilities Confidentiality Executive sessions Blanket Statements of Confidentiality Coalition involvement in participant plans Participant releases of information

23. Funding and Participating Organizations This document was developed under Grants No. 18-P-91537 and 11-P-92045 from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. However, the contents herein do not necessarily represent the policy of the U.S. Department of Health and Human Services, and you should not infer endorsement by the Federal government. Please include this disclaimer whenever copying or using all or any part of this document in dissemination activities.

24. Real Choices Systems Change Grants for Community Living Beth Hudnall Stamm, PhD, Neill F Piland, DrPH, Ann D Kirkwood, Russell C Spearman, MEd, Stacy Specht, MPA & Donna Parker, AA Institute of Rural Health at Idaho State University Idaho Real Choice Systems Change (2001-2004) & Money Follows The Person (2003-2006) Grants