REAL Services, Inc.

1. 9952 REAL Services, Inc. Caregiver Connection Center Lessons Learned

2. Case Management • Individual • Caregiver case management is an on-going activity. In addition, our caregivers needed on-going services. We found establishing a trusting relationship with our caregivers is the number one component of serving our caregivers. • Program • Added one additional full time case manager and a full time office manager due to process evaluation findings after 1 year of operation. Needed more hands-on program management, caregiver follow-up, and marketing of program. • Community • More outreach/marketing was needed in the community and this became a responsibility for the new office manager. Need for improved care coordination among hospitals, nursing facilities, physicians, and home and community based services was identified through the intensive interviews with caregivers.

3. Home Modifications • Individual Learned that needs for home modifications may change over the course of caregiving. Thus, additional home modifications may be needed over time. • Program Case managers continue to assess for additional home modifications as they work with caregivers over time. • Community • A prior program in this community focused on home improvements for individuals age 60 and over in the service area. Our Caregiver Connection program focuses on supporting caregivers so the care recipients can remain at home or in some cases, come home from a nursing facility. The focus changed, and it took time to accommodate this change at the community level.

4. Caregiving Training • Individual Needed more attention to psychosocial issues in the training than was originally proposed in the grant. Also, some caregivers would have preferred one on one training rather than coming to group training. (The one on one training could have been at home or in the office). In addition, for some, caregiver training needed to be more individualized. Case managers needed to have a relationship with caregiver so caregiver would better understand and be more comfortable to participate in training. • Program • Added caregiver stress and dementia training modules • Adjusted classes from 2.5 hours to 1 hour with the option to stay for a 2nd hour after a short break. • More one-on-one trainings were encouraged. • More case management interactions. • Community • In the future, lunch and learn approaches with established community partners will be used for caregiver training.

5. Transportation • Individual • Needed transportation for caregiver training when training was located outside the neighborhood. When training was moved to the neighborhood Caregiver Connection Center, the transportation to training was no longer needed. • Program • Locate caregiver training in the neighborhood. • Community • A lunch and learn approach for caregiver training is planned for the future for sustainability. Transportation will be offered if needed.

6. Respite • Individual • Case managers are finding a need for more types of respite services than was originally proposed in the grant. For example, adult day services, pest control services, personal emergency response monitoring services, and medication dispensers are being used now. The original grant proposal included only home health aides, homemakers, and attendant services for respite. • Program • One year process evaluation findings indicated that more respite services were needed for care situations to be maintained safely at home and to serve caregivers. Thus, the program added these additional services. • Community • These additional respite services have permitted more home care situations to be maintained.

7. Summary • 279 in home assessment completed from July 2009 though February 2012 • 52 caregiver trainings held • 289 caregivers trained • 154 home modifications completed ($625,000 spent) • 102 caregivers received respite ($95,000 spent) • 794 individuals received information and referral services • Economic Impact of Weinberg Caregiver Support Program is a savings of over $5,000,000. (This is based on the fact that Weinberg care recipients were documented as nursing facility eligible yet remained in their homeswith the assistance of their caregivers and this program.)

8. 9962 The Caregiver Ombudsman Outreach Program (The Co-Op) Program Goal To demonstrate that a community-based non-profit can work cooperatively with local government to build upon existing efforts to serve low- and middle-income older adults, creating a new, holistic wraparound program focused on improving quality-of-life by enhancing the services available to family and informal caregivers. Isabella Geriatric CenterNew York City

9. Who The Co-Op Serves • The diverse northern Manhattan communities of Central and West Harlem, Washington Heights and Inwood. • To date clients have been 50% African-American; 41% Latino; and 5% Caucasian. Who Provides the Services • Initially, The Co-Op hired indigenous “advocates,” known in the community, before discovering that professional social workers (MSWs) were actually much more desirable from both the client’s perspective, as well as from the standpoint of program effectiveness and efficiency.

10. How The Co-Op Serves • Designed to complement Isabella’s existing Upper Manhattan Partnership for Senior Independence (UMPSI), funded by the NYC Department for the Aging to serve ~1,000 largely homebound older adults annually through case management, referrals, home-delivered meals, etc. • The Co-Op was envisioned as a way to bolster UMPSI by providing a safety net for the caregivers who are frequently essential to maintaining the client independence that UMPSI seeks to support.

11. How The Co-Op Serves • As it has evolved over the past 2+ years, The Co-Op has built upon the finding that caregivers in the community want and need tangible support and services directly helping relieve them of some of the burden of care. • In particular, this has meant respite focused on providing direct home care services (bathing, cleaning, cooking) by trained home health aides employed by the program to give caregivers the relief they seek.

12. What The Co-Op Has Accomplished • Through February 2012, 176 caregivers had enrolled in The Co-Op (124 are still active), encompassing 2,300+ referral, counseling or advocacy sessions. • 5,362 hours of direct home care services had been provided by trained program aides. • All of UMPSI’s NYC-funded case workers have now received special training in how best to identify and serve the caregivers of their clients.

13. Future Directions • Seeing the benefits of The Co-Op among enrolled clients, the NYC Department for the Aging (DFTA) continues to support ongoing training and engagement of caregivers by DFTA-funded Case Managers. DFTA is in the process of restructuring their service delivery model, seeking comments on the emerging role of Case Managers within NYC. • As many primary caregivers continue to view themselves as receiving little or no support from members of their extended families, the need for low- or no-cost respite services will only grow in the years ahead, increasing the need for such programs and resources.

14. Stumbling Blocks • While the future of The Co-Op’s ability to identify and serve caregivers needing support has been secured through the generous cooperation of New York City, sustaining one of its key programmatic benefits, respite (i.e., home care aides) is beyond the financial capabilities of the City, or Isabella, to continue beyond the end of the grant term. • Can private philanthropy, government funding of chronic care Medicare, lower cost Long Term Insurance or some other creative solution emerge to close this final gap?

15. 10031 Asian Pacific Islander Dementia Care Network: Services for Caregivers Generously Funded by The Harry and Jeanette Weinberg Foundation

16. Project Overview • Dementia Care Network model • Care recipient with Alzheimer’s disease • Metro Los Angeles • Japanese, Chinese and Filipino family members and friends

17. Differences • Between our targeted populations • Within each population • Language and dialects • Immigration patterns • Other basic needs: housing, medical care, etc.

18. Self-Identification as a Caregiver • “My wife made me come to the class. I did so to support her because it’s the women who provide care. Then I realized that I provide care to my mother. I am a son and I am a caregiver.” -- Japanese American Participant in Savvy Caregiver

19. Service Needs • Respite care assistance • Different models • Language capacity • Dementia competency • Services to match continuum of needs • Evidence-based interventions

20. Relationship Building and Trust • Engage leadership early • Partner agencies and gatekeepers • Caregivers and larger community • Cause driven rather than project driven • Look outside of traditional aging network • Unexpected opportunities and barriers

21. Collaborations

22. 10097 Sarasota CARES Caregivers Accessing Resources and Essential Services Nicole Ziemba, B.S.W. Project Director Kathy Black, Ph.D. Project Evaluator Associate Professor USF logo

23. PROJECT RECAP • Establish and provide individualized planning and support for caregivers and their families through innovative approach (Wraparound System of Care) • Develop and utilize extensive volunteer support providing respite to caregivers • Improve communication and collaboration across organizations that work with caregivers and their families • Provide comprehensive community outreach and education for families and organizations

24. Ten Principles of Wraparound

25. Four Phases in the Process

26. CAREGIVER FINDING SIGNIFICANT INCREASE IN SOCIAL QOL Mean pre social QOL = 5.41; Mean post social QOL = 6.27, p =.047 *Source: Caregiver Quality of Life Scale- Revised. Wilder, Parker Oliver, Demiris, & Washington, (2009).

27. SOCIAL COMPONENTS • Team-based • Natural supports • Community-based • Volunteers

28. VOLUNTEER/ RESPITE • Family Voice • Needs of Care Recipient • Final Impact

29. VOLUNTEER IMPACT Dorothy