the role of ilcs in managed ltss & quality & outcomes in ltss

The Role of ILCs in Managed LTSS&

Quality & Outcomes in LTSSSteve Kaye

Community Living Policy CenterUniversity of California San Francisco

CFILC StatewideFebruary 11, 2014

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

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”

The Role of ILCs in Managed LTSS

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

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

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

Four suggested goals

1. Infuse an independent living perspective into the medical-model world of the MCO

2. Foster a consumer-directed, independent provider model of LTSS

3. Ensure that consumers receive appropriate & adequate acute care & LTSS, including non-medical services

4. Promote accountability for LTSS quality & outcomes related to independent living

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.

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.

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.

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.

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.

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.

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.

Quality & Outcomes in LTSS

Why? What? How?

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.

CLPC framework for quality & outcomes in LTSS

LTSS system responsivenessLTSS system responsiveness

LTSS Resources

TheLTSS

Consumer

LTSS program characteristicsLTSS program characteristics

LTSS system responsivenessLTSS system responsiveness

Paid & unpaid providers

Paid & unpaid providers

Supportive environmentSupportive

environment

LTSS Resources

LTSS receivedLTSS received

OutcomesOutcomes

The LTSS Consumer

Met/unmet needMet/unmet need

LTSS program characteristicsLTSS 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.

LTSS program characteristicsLTSS program characteristics

• 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.

LTSS system responsivenessLTSS system responsiveness

Paid & unpaid providers

Paid & unpaid providers

Supportive environmentSupportive

environment

LTSS Resources

• 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.

Paid & unpaid providers

Paid & unpaid providers

Supportive environmentSupportive

environment

LTSS Resources

• 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.

• 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.

LTSS receivedLTSS received

OutcomesOutcomes

The LTSS Consumer

Met/unmet needMet/unmet need

• 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

LTSS receivedLTSS received

OutcomesOutcomes

The LTSS Consumer

Met/unmet needMet/unmet need

• 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.

LTSS receivedLTSS received

OutcomesOutcomes

The LTSS Consumer

Met/unmet needMet/unmet need

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

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

Identifying and Selecting Long-Term Services and Supports Outcome Measures

A 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)

Quality & Outcomes in LTSS

Example: Proposed Evaluation of the DOR Transition Fund

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?

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

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

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

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

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.

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?

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

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