Overview of n4a’s Preparing for the Future Project: What We Learned from Title VI Organizations

1. Overview of n4a’s Preparing for the Future Project: What We Learned from Title VI Organizations National Title VI Training &Technical Assistance Forum & Listening Session Baltimore, Maryland May 1, 2007

2. Project Description • A multi-component project designed to support the aging network in successful planning, implementation, and improvement of programs to enhance older people’s choices for independence

3. Project Goals 1) Create a self-assessment survey about key components of Choices for Independence, including streamlined long-term care systems and more community-based options 2) Develop training and technical assistance for the aging network for moving forward with long-term care programming.

4. Why do this survey? • Advocacy • Information for your tribe, state and national organizations • Data for grant-writing and fundraising • Compare your organization to others • Identify best practices and technical assistance needs

5. Partner Organizations • National Association of Area Agencies on Aging (n4a) • Scripps Gerontology Center, Miami University, Oxford, Ohio

6. National Association of Area Agencies on Aging (n4a) • Represents 650 AAAs and 243 Title VI-Native American aging programs. • Advocates for older Americans and their caregivers providing them access to critical home and community-based and long-term care services across America. • Provides advocacy support, education, information, and technical assistance to AAAs and Title VI agencies.

7. National Association of Area Agencies on Aging (n4a) • A national voice on aging services, home and community-base care, livable communities for all ages, senior mobility, emergency readiness and preparedness for older adult and “answers on aging”. • Assists its members to build their capacity to help older persons and persons with disabilities live with dignity and choice in their homes and communities for as long as possible.

8. Scripps Gerontology CenterMiami University, Oxford, Ohio • A well established research institution dedicated to generating and disseminating information about aging. • Recent Scripps Projects and Publications • Consumer Voice and Choice in Long-Term Care • Assessing the Quality of Caregiver Support Services • Long-Term Care in Ohio: A Longitudinal Perspective • Will They Stay or Will They Go? Predictors of Disenrollment From Home and Community-Based Services

9. Overview of Choices for Independence • 2006 Older Americans Act Amendments • To position the aging network for the future, improve the quality of life for millions of people, and rebalance the current long-term care system based on three principles.

10. Choices Principles • Enable consumers to remain in their own homes through the provision of home and community-based long-term care, including the integration of OAA programs into long-term care systems; • Empower consumers to stay active and healthy through disease prevention and health promotion services; and • Streamline access to home and community-based services

11. Scripps Gerontology Center Project Goals and Tasks 1) Create a self-assessment survey about key components of Choices for Independence, including streamlined long-term care systems and more community-based options 2) Develop training and technical assistance for the aging network for moving forward with long-term care programming.

12. Training and Technical Assistance • Business Center • workshops on strategic planning for long-term care • resources for business planning • Technical Assistance • driven by what we learn from the survey • provided by n4a and other resources

13. Survey Development Goals for the survey • Information about involvement of Title VIs and AAAs in long-term care • Questions that capture diversity of experiences within the aging network • User-friendly; useful data; well-used data

14. Survey Development Strategies to achieve those goals • User-friendly: as short as possible and as easy to complete as possible • Useful: quick results, useful reports available to Title VIs and AAAs • Well-used: planning and technical assistance • Questions that capture diversity of experiences

15. What we sought to learn… • Lay of the land • Where Title VIs and AAAs are positioned in the long-term care system • Point of entry; services provided; funding sources; interorganizational collaboration • Successes and challenges • What you want to know about the aging network and the work of Title VIs and AAAs • Ideas to facilitate survey participation

16. How we sought to learn…

17. Listening Sessions(National and Regional) • Added to lay-of-the-land understanding • Identified themes and issues • Background for focus groups

18. Phoenix and Sacramento KAI Cluster Trainings • Training topics • Questions raised • Discussions inside and outside of sessions

19. One Title VI/AAAFocus Group Washington, D.C.: n4a advisory group, 12 members include two Title VI org directors (Arizona, Florida, Indiana, Iowa, Kentucky, Massachusetts, Michigan, North Carolina, Ohio, Oregon)

20. Two Title VIFocus Groups • Phoenix facilitator: Randella Bluehouse, Inter Tribal Council of Arizona/ AAA Reg. 8 n=7 • Sacramento facilitator: Dee Horn, Inter-Tribal Council of Nevada n=9 (Alaska, Arizona, California, Idaho, Nebraska, Nevada, New Mexico, North Dakota, Oklahoma, Washington)

21. Two AAA Focus Groups • Oxford, OH: Regional n=9 (Ohio, Kentucky, Indiana) • Biloxi, MS: SE4A n=9 (Alabama, Florida, Georgia, Kentucky, North Carolina, South Carolina, Tennessee)

22. Title VI Focus Group Process • Broad participation as questions and issues arose • Meg Graves (AoA) in Phoenix • Yvonne Jackson (AoA) in Sacramento • Cynthia LaCounte (KAI) at each • Bob Logan (n4a) at each • Kathy McGrew (Scripps Gerontology Center) at each

23. Individual Resources • Allen Allery, Director, National Resource Center on Native American Aging • Yvonne Jackson, Director of the AoA Office for American Indian, Alaskan Native, and Native Hawaiian Programs

24. So… what have we learned? • We have been well informed for this stage of survey development. • Next stage: Title VI key informants, Title VI advisory group

25. Our sources helped us understand… • Diversity among tribes, Title VI organizations, and their political/governmental contexts • If you have seen one Title VI organization, you’ve seen one Title VI organization • Also true of AAAs

26. Definitions of long term care • Tend to associate “long term care” with nursing homes (very few nursing facilities in Indian Country) • CMS moving away from institutional bias and “rebalancing” toward home and community based services (HCBS) • The focus of Choices and of the survey is on HCBS

27. Indian Country is“leading by necessity and tradition”: • HCBS emphasis • Consumer direction-family members providing care to their elders

28. “We came into this world with our own food We came into this world with our own medicine We came into this world with our own customs and practices…. And we have been disconnected from that” -- a Phoenix focus group participant

29. Policy and Program Challenges • You are asked to provide services in a way that is often incongruent with customs, traditional practices, and some realities not shared by most AAAs…“Square peg, round hole” • Regulations and imposed programs are often perceived as barriers. • Tribes and Title VI organizations do not always feel understood, respected, or trusted.

30. Relationship with state is critical • Much variability in relationships between tribes/Title VIs and states: • strong, cooperative relationships • relationships characterized by tension • non-relationships • Most significant challenges: • access to Medicaid HCBS waiver services • frustration about not receiving direct funding

31. Title VIs and AAAs: Different Paths • Title VIs and AAAs walk different paths in providing long-term care: • sources of funding and reporting lines • service resources

32. Title III (AAAs) and Title VI coordination • Required, but not defined • There are models of effective coordination, but they are not the norm. • All are stretched beyond capacity. • All feel under constant threat of losing funding.

33. Access to services/programs • Rurality an enormous issue (mirrored in some of the rural AAAs) • “All the reservations and rancherias are located so far away from the cities that we can’t get to those services and the services aren’t coming out to the reservation. When money flows from the state, it goes to [the cities.]”

34. Geographic distances: a major challenge “We use what’s available, but there’s not much out there. Our public health nurse may travel a hundred miles to see someone.” “We have reservations with an hour-and-a-half to two-hour emergency response time…let alone constant care of any type” “Phone services… We had to go through I don’t know how many hoops just to get telephone service to the clinic; it took us about three years to get a phone line in.”

35. Wide Variability • Size/scope of programs (staff, services, population served) • Position of Title VI organizations in tribal long-term care

36. Perspectives about expanding programs • Often seen as beyond capacity/role of organization • Open to identifying ways to expand programs by positioning the organization and expanding capacity

37. Survey Participation Challenges • Seeing the value • Time/ease • Tribal agreement • Trusting the process

38. Sample Questions

39. Enabling Consumers to Remain in their Own Homes DRAFT • Please check which of the following home and community-based services your organization provides, either directly or through contract. Indicate if the service is provided with OAA funding or with sources OTHER than OAA funding. Where applicable, please check whether the service is consumer/self-directed. Check all that apply. Service OAA Other Consumer/Self FundingFundingDirected Assistive devices □ □ □ Case management □ □ □ Chore □ □ □ Home delivered meals □ □ □ Homemaker □ □ □ Home Modification □ □ □ Home repair and maintenance □ □ □ Personal Care □ □ □ Transportation □ □ □ Family Caregiver Support Program □ □ □ Native American Family Caregiver □ □ □ Support Program

40. Enabling Consumers to Remain in their Own Homes • How do you rate your organization’s progress, if any, on each of the areas below? DRAFT Do not plan to work on this Plan to work on this but have not begun Have taken preliminary steps Have made some progress Have made significant progress Have completed task or have a program in place

41. Streamlining Access to Home and Community-Based Services • How do you rate your organization’s progress, if any, on each of the areas below? DRAFT Do not plan to work on this Plan to work on this but have not begun Have taken preliminary steps Have made some progress Have made significant progress Have completed task or have a program in place

42. Enhancing Organizational Capacity for Home and Community-Based Long-Term Care Systems • How do you rate your organization’s progress, if any, on each of the areas below? DRAFT Do not plan to work on this Plan to work on this but have not begun Have taken preliminary steps Have made some progress Have made significant progress Have completed task or have a program in place

43. Enhancing Organizational Capacity for Home and Community-Based Long-Term Care Systems • To what extent do you agree or disagree with each of the following statements? DRAFT Strongly Disagree Strongly Agree Disagree Agree

44. Organizational Capacity to Develop and Implement Home and Community-Based Long-Term Care Systems DRAFT • Is the area served by your organization: __ Predominantly urban __ Predominantly suburban __ Predominantly rural • Which of the following structures best describes your organization? __ An independent agency __ A part of city government __ A part of county government __ Division of tribal government __ Division of an Inter-Tribal Council __ Part of a council of governments or regional planning and development agency __ Other. Please describe___________________________

45. Organizational Capacity to Develop and Implement Home and Community-Based Long-Term Care Systems DRAFT • How long has the current director of this organization held this position? _____years _____months • What is the total number of full-time and part-time staff employed by your organization? _____full-time _____part-time • What is the total number of unduplicated people served by your organization in 2006? ______________

46. Staff Employed (average) Full-Time X Part-Time X Clients served (average) XXX Length of employment of current director (average years) X Mock Survey Report General Description

47. Mock Survey Report Percentage of Title VI Organizations who provide home delivered meals, personal care, and chore services, by funding source.

48. Mock Survey Report Percentage of Title VI organizations who agree or disagree that decisions at their state and/or tribal level limit what they can do.

49. Mock Survey Report Progress made by Title VI organizations (who serve more than 200 elders) in developing collaborations with their local AAA.

50. Mock Survey Report Percentage of Title VI Organizations who agree or disagree with the following statement “We are not looking for new opportunities because we can barely do what we are doing now,” by size of staff. Fewer than 5 employees 5 or more employees