Independence at Risk: Older Californians with Disabilities Hold On as Public Supports Shrink

1. Independence at Risk: Older Californians with Disabilities Hold On as Public Supports Shrink Kathryn G. Kietzman, Steven P. Wallace, Eva M. Durazo, Jacqueline M. Torres, Anne Soon Choi, A.E. Ted Benjamin, & Carolyn Mendez-Luck UCLA Center for Health Policy Research

2. Acknowledgments This study was funded by a grant from whose mission is to advance the development of a sustainable continuum of quality care for seniors. www.TheSCANFoundation.org Help recruiting respondents came from the public authorities/ DPSS in Los Angeles, San Diego, Santa Clara and San Francisco Counties

3. Study Objectives • To identify unmet needs among older Californians who are dually eligible for Medicare and Medi-Cal • To investigate how these older adults patch together public and private services to remain safely in their homes • To document the impact of service reductions on these older adults and their caregivers

4. Rationale • Public services have been reduced and significant additional cuts are pending • Administrative and program data collected in isolation • No study has looked across the complete network of formal and informal supports

5. Long-Term Services and Supports (LTSS) in California

6. Methods • Qualitative approach • Multiple data collection points over 1 year • In-depth interviews in English and Spanish, both in-person and over the telephone • Data from IHSS care recipients and their caregivers

7. Care Recipient (CR) Characteristics (n=33)

8. Care Recipient (CR) Characteristics (n=33)

9. Caregiver (CG) Characteristics (n=22)

10. Caregiver (CG) Characteristics (n=22)

11. Data Analysis • Interviews audio-taped and transcribed • Independent “in vivo” coding • Team review and creation of code list • Grouping and categorization of codes • Identification of patterns and themes in data

12. Results at Baseline • Disabled and low income older adults who rely on public services have highly changeable needs • Many have unmet needs, including mental health, social and financial needs that are overlooked • Most have few or no other options, resulting in a fragile network of care

13. Disabled and low income older adults who rely on public services have highly changeable needs “I’m like a lot of people – on good days, I do too much, I wear myself out. On bad days, I don’t do anything. And so you really have to learn to pace yourself…It’s really hard for me, I need a day to recover…” --Mitch, 65 years old

14. Many have unmet needs, including mental health, social and financial needs that are overlooked “Jack does not get meals delivered on the weekends. They’ve cut back. Meals on Wheels used to deliver extra meals that would go in the freezer and they’d be for the weekends. I’ve noticed that…periodically they’re showing up again… But, for the most part he doesn’t get those anymore.” -- Carol, 38 year old paid caregiver

15. Most have few or no other options, resulting in a fragile network of care “She called me, she had a medicine error…and she didn’t know what to do with it. I’m the only one that’s there for her…There’s no family. There’s no other providers. So, to have someone else, really, I don’t think anybody should rely solely on one person.” --Diane, paid caregiver

16. Results Over Time • Care needs and support networks continue to change • All prefer to stay at home and most manage to do so, even with high level needs • Family can be the key to remaining independent

17. Care needs and support networks of these older adults with disabilities continue to change “She can’t eat on her own anymore… So, I sit with her and I give her a spoonful of food and wait for her to finish it...Now I can’t leave her for even one second because since she doesn’t talk I have to guess: ‘Do you need to use the bathroom?’ and she claps her hands and I take her to the bathroom…” --Ana, IHSS Caregiver and daughter

18. All prefer to stay at home and most manage to do so, even with high level needs “…so when I started getting bad and worse, it took me a long time to be willing to let anybody into my life and it’s just been an incredible relief. You know, I’m terrified of having to go into a nursing home because I want to be surrounded by books and things I love and my garden and I have a cat someplace here.” – Jill, 72 years old

19. Vickie: A case study • 89 years old • Chronic and severe back pain • Respiratory disease, esophagus disorder • Feeding tube • In 2011, IHSS hours were cut 3.6% • Currently receives 112 IHSS hours each month • If additional budget cuts are triggered, she could lose more than 20 hours of help each month

20. Vickie’s network of care • Two IHSS caregivers • MSSP social worker • HUD subsidized housing • Home health nurse • Phone calls from two children • Companionship of a pet dog

21. Vickie: The meaning of independence “I still want to be independent at this stage in my life. It’s just so good to feel that you can still take care of yourself at 89 years old, because many people by that age can’t do it at all.” -- Vickie, 89 years old

22. Family can be the key to remaining independent “She can never be by herself, someone has to be here…My mother, she relies so much on both of us, especially when she needs to be fed, you know, fed and taking, you know, her showers or bath, dressed up, too. Practically, it’s like a child that I have to pretty much care for her, the things that she cannot do on her own.” --Monique, IHSS caregiver and daughter

23. Policy Recommendations • Consolidate and integrate LTSS programs • Better coordinate services for older adults with disabilities • Enhance opportunities to support caregivers

24. Conclusion • Additional program cuts and transitions are pending. • Older low-income adults with disabilities face increasing uncertainty about the sustainability of their support networks. • Critical opportunity to transform LTSS in California and support the preferences of older adults to live independently at home.

25. For more information about the HOME study, please visit the HOME project webpage at www.healthpolicy.ucla.edu/HomeStudy or contact Kathryn Kietzman at <kietzman@ucla.edu>