The Role of ILCs in Managed LTSS & Quality & Outcomes in LTSS

1. The Role of ILCs in Managed LTSS&Quality & Outcomes in LTSS Steve KayeCommunity Living Policy CenterUniversity of California San Francisco CFILC Statewide February 11, 2014

2. Community Living Policy Center • New policy-focused research center at UCSF • Successor to the PAS Center • Funded by • National Institute on Disability & Rehabilitation Research • Administration for Community Living, HHS • Collaboration with • University of Illinois at Chicago • Paraprofessional Healthcare Institute • DREDF • Topeka Independent Living Resource Center • National Council on Aging • Henry Claypool • Sibling Leadership Network

3. Community Living Policy Center • Goals: • Identify & study promising practices in LTSS • Promote quality & outcome measures & data systems • Create plan for future LTSS research • Support the U.S. Dept. of HHS Community Living Council & new “Community Living Strategic Plan”

4. The Role of ILCs in Managed LTSS

5. How this project came about • SPIL called for study of IHSS • DOR contracted with UCSF • People said: Focus instead on managed LTSS • Changed scope of work • One focus: How do ILCs gear up for transition to managed care? • Participated in CFILC committee • Found out what others are doing/proposing in other states & nationally

6. Potential role of ILCs in managed LTSS • MCOs know a lot about acute care but not LTSS • They are medical model organizations unfamiliar with the social model • Don’t understand the importance of LTSS in supporting independent living • Don’t value community participation as a goal • Don’t understand or value consumer direction • They may not have adequate experience with PWDs • ILCs are uniquely positioned to help solve these problems and ensure that consumers get adequate, appropriate, high quality services

7. ILCs have diverse, sometimes conflicting goals • On the one hand… • Serve consumers as best we can • Maintain adherence to independent living philosophy • Freely advocate for systems change • On the other hand… • Need to diversify funding stream • Keep up with changing healthcare/LTSS landscape • Seize opportunity to improve LTSS system

8. Four suggested goals • Infuse an independent living perspective into the medical-model world of the MCO • Foster a consumer-directed, independent provider model of LTSS • Ensure that consumers receive appropriate & adequate acute care & LTSS, including non-medical services • Promote accountability for LTSS quality & outcomes related to independent living

9. Suggested activities • Partnership: a contractual relationship with an MCO to provide a service to them or their members. • Program: service provision by the ILC that is external to the MCOs, funded by a government agency or a foundation. • Advocacy: an area of focus for systems change advocates, consumer-advocates, or other ILC staff working to change attitudes or practices.

10. Goal 1: Infuse an independent living perspective into the medical-model world of the MCO • Partnership:Provide training to MCO staff and providers on the independent living philosophy. • Partnership:Position ILC staff or consumer advocates to work within the MCO and serve as experts in independent living and LTSS. • Advocacy:Recruit knowledgeable consumer-advocates or ILC staff to serve on boards and committees within the MCOs, or external committees established by oversight bodies.

11. Goal 2: Foster a consumer-directed, independent provider model of LTSS • Partnership:ILCs could contract with their counties to help connect consumers with available workers • Partnership:Provide training for workers, as appropriate, in independent living and the skills needed to support consumers. • Partnership:Provide training to consumers in how to hire, manage, and fire workers, deal with paperwork, etc. • Advocacy:ILCs could work to make MCOs aware of the advantages of consumer-directed services.

12. Goal 3: Ensure that consumers receive appropriate & adequate acute care & LTSS, incl. non-medical • Partnership:Contract with MCOs to provide customer service or troubleshooting for their members needing LTSS. • Advocacy/Program: An external ombuds program to advocate for consumers in their dealings with MCOs. • Program/Partnership:Create a peer mentorship program for plan members with disabilities. • Program:Provide consumer education or options counseling about plan choices, services & programs, etc.

13. Goal 3: Ensure that consumers receive appropriate & adequate acute care & LTSS (cont.) • Partnership:Provide, or participate in providing, care coordination services for members receiving LTSS, based in an independent living framework. • Partnership:Contract with the MCOs to provide training for MCO staff and providers in cultural competence, disability awareness & accommodations. • Partnership:Provide accessibility assessments of programs & facilities, and consultation on how to improve accessibility.

14. Goal 3: Ensure that consumers receive appropriate & adequate acute care & LTSS (cont.) • Partnership:Contract with MCOs to transition people out of nursing homes and other institutions. • Partnership:MCOs may welcome assistance from ILCs in helping members avoid institutionalization and remain in the community. • Partnership/Program: ILCs could provide training to family members in how to support their family member in living independently and avoiding institutionalization.

15. Goal 4: Promote accountability for LTSS quality & outcomes related to independent living • Statewide Advocacy:With senior organizations, advocate that the state require MCOs to monitor quality & outcomes and report to public. • County Advocacy:With senior organizations, advocate for MCOs to monitor quality & outcomes and report to public. • Advocacy:Using quality & outcomes data, consumer complaints, & other information, periodically assess the performance of the MCOs.

16. Quality & Outcomes in LTSS Why? What? How?

17. Why measure quality/outcomes in managed LTSS • Danger of managed LTSS turning system into a black box • Enables state oversight of plans’ commitments to consumer-focused, quality services • Outcome data can encourage plans to focus on meeting consumer needs • Advocates can track outcomes, compare across plans, make both plans & state accountable • Outcome data can help consumers choose plan (or FFS) • Comparative effectiveness of programs and settings • Shift resources to programs and settings with better outcomes.

18. CLPC framework for quality & outcomes in LTSS LTSS program characteristics The LTSS Consumer LTSS Resources LTSS system responsiveness

19. LTSS program characteristics The LTSS Consumer LTSS Resources Paid & unpaid providers LTSS received Met/unmet need Supportive environment Outcomes LTSS system responsiveness

20. LTSS program characteristics • Scope. Eligibility criteria, extent and nature of benefits, cost containment strategies. • Financing. Spending by setting; global/flexible budgeting; financial robustness & sustainability. • Equity. Fairness across populations and geographic areas; uniform, unbiased assessment. • Organization. Consolidated system versus fragmented patchwork of separate programs. • Navigability. Assistance gaining access to & navigating programs, facilitated or streamlined application process. timely eligibility decisions.

21. LTSS system responsiveness • Accountability/transparency. Data systems & measures of quality/outcomes, public reporting, oversight & contract enforcement. • Consumer empowerment. Ombuds programs, complaint resolution & reporting, grievance & appeals, stakeholder role in development & oversight. • Quality improvement processes. System adjusts to feedback from data, stakeholders, etc. • Policy environment.Policy/program malleability.

22. Caregiver/family support. Support for & status of families and family/friend caregivers, compensation of family members, and impact of caregiving on families. • Workforce development. Job characteristics such as wages and benefits, training/certification, injury rates, and satisfaction. • Worker availability & quality. Worker shortages, workforce turnover/retention, skill levels that match consumer needs. LTSS Resources Paid & unpaid providers Supportive environment

23. Accessibility/accommodations. Home & community accessibility features; accommodating physical & social environment. • Technology.Availability & use of AT to support community living. • Personal resources. Financial resources, social support. • Settings. Extent to which the setting is integrated, offers consumer control, and promotes participation & engagement. LTSS Resources Paid & unpaid providers Supportive environment

24. Satisfaction. Satisfaction with quality & sufficiency. • Appropriateness. Person-centeredness; consumer choice, direction, & control; support in making decisions about services; reliability; respect & dignity. • Coordination. Care coordination & integration of acute care & LTSS. • Utilization. Healthcare & LTSS utilization, barriers to utilization, and maintenance of or transition to community living. The LTSS Consumer LTSS received Met/unmet need Outcomes

25. Amount • Level of need • Amount of paid & unpaid LTSS received • Extent to which services received enable person to participate • Adequacy • Extent to which paid & unpaid LTSS meet the person’s needs • Consequences of unmet need The LTSS Consumer LTSS received Met/unmet need Outcomes

26. Health and function. Incl. mental health & secondary conditions, and ability to maintain functioning. • Safety. Sense of security, freedom from abuse & victimization, injury prevention. • Well-being. Includes life satisfaction, happiness, sense of autonomy, & other consumer-assessed quality of life measures. • Participation. Social/economic participation, relationships, social inclusion, and community engagement & integration. The LTSS Consumer LTSS received Met/unmet need Outcomes

27. How to obtain data • Program records and administrators • Advocates & other stakeholders • Consumer records • Administrative records • Medical or claims records (encounter data) • Analyses of national or state survey data • Surveys • LTSS recipients • Families & family caregivers

28. What can advocates do? • Inspect existing outcome surveys • Ask state for any surveys used to measure LTSS outcomes in HCBS Waiver programs • Review surveys for appropriateness to desired measurement goals • Identify gaps and provide suggestions to fill them • Advocate for stakeholder input on measures • State could establish forums for consumer/advocate input • Advocate for required quality measures from MCOs • Through contract language, state- and MCO-level policies • Recommend specific quality measures to MCOs

29. Identifying and Selecting Long-Term Services and Supports Outcome MeasuresA Guide for AdvocatesJanuary 2013[Available at: http://dredf.org/2013-documents/Guide-LTSS-Outcome-Measures.pdf]Prepared by the Disability Rights Education and Defense Fund (DREDF) in collaboration with the National Senior Citizens Law Center. Funded by the National Institute on Disability and Rehabilitation Research (Grant #H133B080002)

30. Quality & Outcomes in LTSS Example: Proposed Evaluation of the DOR Transition Fund

31. Evaluating the DOR transition fund • ILCs can apply to DOR for funds to help transition people out of institutions • ILCs report back on what they spent the money on, but aren’t required to track consumer or report outcomes • Project focused on addressing these questions • Did the person remain in the community? • Did they do well after they transitioned? • Are they better off after transitioning than before?

32. How to measure the outcomes of interest • Is there an existing survey we can use? • Short answer: No • Are there existing measures we can use? • Yes, many surveys ask relevant questions • And: There is a conceptual framework for LTSS outcomes that closely matches the IL perspective • Inspected 24 surveys and identified 150 survey questions relevant to 12 outcome domains

33. Personal Experience Outcomes Integrated Interview and Evaluation System (PEONIES) • A set of quality of life domains developed for Wisconsin’s HCBS programs • IL focus that resonates with transition team priority areas • Not a measurement tool, but a list of important areas for measurement • 12 domains in three areas: • Choice in living arrangement, services, daily life • Health, safety, abuse/neglect • Personal experience: extent of relationships, importance of activities, community involvement, stability, respect/fairness, privacy

34. Recommendations to DOR • Administer survey before transition • Wait a fixed period of time for each consumer • 6 months, 9 months, 1 year? • Locate consumer and report on residential situation • Administer nearly identical survey • Report pre- and post survey data to DOR • Possibly also gather hours/utilization data

35. Survey development • Spoke with transition teams to discuss what outcome domains were important to consumers who transitioned • Areas corresponded to several PEONIES domains • Asked transition teams to review existing questions corresponding to PEONIES domains • Each team selected or adapted several questions • Triangulated based on responses & survey design principles • Asked teams to review draft survey and revised it based on feedback

36. The survey (post-transition version) To start, I have some questions about your living arrangement: • Do you like where you live? • In general, do you feel safe in your home? Next, I’d like to talk about how you spend your time. Would you say the following statements are true, mostly true, or false? • I have freedom and control over what I do and how I spend my time. • I can get out of my home whenever I choose. • I am satisfied with how much contact I have with friends and family. • I am satisfied with my level of social and community activity. • I am satisfied with the way I am spending my life these days. • I feel that I am a part of my community.

37. The survey (post-transition version) Now I have some questions about the people who are paid to help you in your home or elsewhere:  • Did you help choose the people who are paid to help you? • Do the people paid to help you listen to what you ask them to do? • Do the people paid to help you always do what they are paid to do? • Do the people who are paid to help you respect your privacy? Here are some questions about your quality of life: • How often do you feel lonely? Would you say very often, often, sometimes, rarely, or never? • How would you rate your quality of life? Would you say excellent, very good, good, fair, or poor? • One final question: What would you say has been the biggest change in your life since you left the facility?

38. Evaluating the transition fund • Consumers transitioned & expenditure • ILC ranking of number transitioned • Proportion of consumers still living in the community at follow-up, and other settings • Distribution of survey responses on all measures • Comparison of pre and post survey responses • Optionally, estimate of cost savings based on post-transition service usage

39. Conclusions • Many potential roles for ILCs as consumers transition into managed, integrated care: partnerships with MCOs, programs funded in other ways, systems change advocacy • Measuring quality & outcomes in LTSS is a particularly pressing issue: system, resources, and consumer-level measures • Consumer-focused outcome measures are of particular interest to the IL community • Measurement tools can be constructed using existing tools as a starting point