States play a major role in how PD-MLTSS is operationalized: How PD-MLTSS is shaped and operates in a given state is determined by either the presence or absence of state policies and procedures that emphasize participant direction in MLTSS. Because most of the states in this study possessed nominal language in their MLTSS contracts regarding participant direction, subsequent implementation of PD-MLTSS was delegated to MCOs who may, or may not, understand the philosophy or implementation of participant direction. Perhaps the clearest example is Tennessee's EVV system. From the state's perspective, it is verifying the receipt of services and the need for emergency back-up since the system notifies of worker no-shows. From the MCO perspective, the EVV makes the PD-MLTSS more efficient as it automates the verification of service delivery and reimbursement, thereby reducing unnecessary communication with the participant. But other non-MCO stakeholders described it as a tracking mechanism that takes control and flexibility away from participants when managing their workers' schedules. The issues are who is really in control and how can participant-directed supports and services be integrated into the management of coordinated health care and LTSS.
There are examples of how the principles of managed care and participant direction can be integrated: Early research and commentary on the compatibility of participant direction and managed care identified the possible disconnect between the goals of managed care entities (improve member health and well-being by providing efficient, coordinated, and cost-effective services) and participant direction (improve participant health and well-being by providing participants with meaningful choices and control over their services). The Commonwealth Care Alliance (CCA) in Massachusetts has been developing protocols that explicitly integrate PD-LTSS with MLTSS. CCA is working on how to integrate the participant's LTSS plan with the full care plan and how to involve the participant and their worker (with the participant's permission) into the total care planning process. Given the low turnover of participant-directed aides, involving the worker not only provides continuity of care but also can provide CCA an additional point of information to respond to health problems as they develop and possibly avoid emergency room visits and unnecessary hospital admissions. The Massachusetts NPA exemption also allows CCA to avoid bringing in an expensive nurse for simple issues like medication management (an area where other states have also amended their NPA). Based on its experiences, CCA is seeing tremendous reasons to support and grow participant direction, not the least of them is the CCA's work illustrating the common goals to MLTSS and PD-LTSS: (1) The improvement of participant health and well-being; (2) The improvement of service satisfaction; and (3) The reduction of service costs. Measuring the comparative effectiveness of participants enrolled in PD-MLTSS against those enrolled in only MLTSS against these measures should be of high interest for states and MCOs alike.
Training for MCO service coordinators is vital: In Arizona, where PD-MLTSS is considered one among many service options, there is little incentive on behalf of MCO service coordinators (who are managing mixed caseloads across the LTSS continuum) to promote PD-MLTSS. Across all five states, service coordinators acknowledged that arranging PD-MLTSS involves extra "upfront" time working with the participant. Couple this additional effort with the expectation that the Arizona service coordinator is responsible if the participant's back-up plan fails, it is not surprising that Arizona has the lowest PD-MLTSS take-up rate (1.2%) among the five study states. Tennessee stakeholders talked about how the take-up rate for PD-MLTSS depends on the service coordinator where some service coordinators have 25% of their caseload self-directing while others have zero. While Arizona illustrates a structural barrier, Tennessee suggests the need for additional professional development training in participant direction. Across the five states the amount and type of training of MCO staff varied greatly. Too often, staff training was restricted to the mechanics of presenting the participant direction option to the member.
How PD-MLTSS is presented to participants is critical: Respondents across three of the states (New Mexico, Tennessee, and Texas) remarked that participants are overwhelmed with materials about self-direction and tend to be apprehensive of becoming an employer. While each state required MCOs to have person-centered processes in place, it does not appear that all service coordinators receive training in person-centered planning or participant direction that could reduce the participant's sense of feeling overwhelmed. Beyond training of professional staff, the use of peers is an undeveloped resource that could help people become comfortable with PD-LTSS. Because individuals who newly find themselves in need of LTSS are often overwhelmed, in 2014 New Mexico will institute under Centennial Care a 120-day adjustment period when the individual will receive agency-based services. At the end of the 120 days the individual will then be presented the option of PD-MLTSS. Such an arrangement begs a number of questions: What if the person already has a participant-directed plan in mind? After receiving services from an agency for four months, how likely is the participant to change their services to self-direction? Person-centered planning needs to start at the beginning. While New Mexico's adjustment period is well intentioned, it may be best as an option and not a requirement for all new enrollees. According to members of the NPN, people learn best by actually doing and perhaps agency-delivered services can help while a person is developing their participant-directed plan and have agency-based services available in the interim--so there is no gap in services--but they should not have to be mandatory for four months.
States expressed that commitment to participant direction is important to program growth: Across all five states the numbers of participants enrolled in PD-MLTSS is low. Few states could compare enrollment numbers between PD-MLTSS and MLTSS or the take-up rates for participant direction before and after MLTSS was implemented. Only Tennessee has clear enrollment expectations and a review of the state's enrollment targets, which illustrates how the program has grown (see Appendix C, Tennessee Enrollment Targets and PD-MLTSS Performance Measures). Without such expectations, even states with a historical commitment to participant direction leave the future growth of PD-MLTSS to the discretion of MCOs (who may or may not be committed). While such an approach has worked in Texas (where non-MCO stakeholders lauded MCOs for promoting PD-MLTSS even though the state appears to be indifferent) it is not a guaranteed approach in other states. Even in Tennessee, non-MCO stakeholders believed many more members could be enrolled in PD-MLTSS. One Tennessee stakeholder suggested that participant direction is the default program for eligible participants so that participants are required to "opt out" of PD-MLTSS rather than to "opt in." The service coordinator presents them with their options and if they do not want to choose participant direction they actually have to sign off to say they do not want to choose it. Such a policy changes the dynamic of the presentation of options.
PD-MLTSS would benefit from clarity of the roles and responsibilities of the different PD-MLTSS supports: In some states this lack of clarity is due to the lack of specificity in state contracts with MCOs (or absence of policy and procedure manuals) regarding participant direction, participant-directed services, and necessary supportive services such as FMS. This lack of specificity can result in important support functions not being readily available. An example of this was the lack of knowledge about worker registries for PD-MLTSS members. Even though every MCO offers an employer authority option of PD-MLTSS, no one knew whether a worker registry existed in the state to assist participants in finding a worker. Many MCOs assumed the state or the FMS agency would assist in this area (or express the need for such a registry but were uncertain that it was their role to provide one). This small point depicts perhaps a larger issue in PD-MLTSS, namely that unless it is delineated as a specific role or responsibility in a RFP, contract, or policy and procedure manual, it depends on the interpretation of the MCO, FMS, or the participant as to who is responsible. This can lead to confusion and frustration on behalf of all three parties. Another example is the existence of overlapping roles and responsibilities. For example, in Tennessee, like most states with PD-MLTSS, if an individual wants to select the participant-directed option, it is a decision that is made with the MCO service coordinator. Afterwards, they are assigned a support broker with the state FMS provider, leaving the participant with a support broker from the FMS and a services coordinator from MCO. As one Tennessee key informant noted, the existence of a support broker and a service coordinator can lead to some confusion--which is very understandable--about whom to ask questions of and who provides direct guidance to the participant.
FMS is a key PD-MLTSS support element: The five states used the FMS entities in various ways. In all states the FMS provided traditional financial management support, but some states had the FMS provide other types of support as well. For example, in Tennessee the FMS provides ongoing information and assistance to the member regarding participant direction. In Arizona, Tennessee, and Texas the FMS provides assistance with worker recruitment. In Texas the FMS provides training for members and/or their workers. The number of FMS entities in the five state sample ranged from one (New Mexico and Tennessee) to approximately 400 (Texas). One negative to PD-MLTSS in Texas is the number of FMS the MCO has to contract with. This may make it difficult to monitor quality of service provision. Texas is very committed to participant direction but the system to deliver PD-MLTSS is complex with hundreds of different partners.
MCOs would benefit from increased engagement from participants: The idea of involving participants in the design and evaluation of LTSS has been promoted for decades. Each of the states and MCOs in this study described various ways participant involvement is sought (e.g., public forums, town halls, member surveys, and advisory boards). However no one reported that their survey contained PD-MLTSS specific questions. While all of the state respondents reported having an MLTSS advisory council and some states (Arizona and New Mexico) encourage MCOs to have advisory councils. With the exception of New Mexico, none of the advisory councils are specifically focused on PD-MLTSS. Given the nature of PD-MLTSS, the general lack of meaningful participant engagement is a major shortcoming. As the title of a 2011 study on the relative advantages of an advisory committee that is committed to the participant direction, "it's not so simple" to engage participants given limitations in time and resources.16 Despite the limitations, participant engagement is seen as an avenue for better PD-MLTSS program design and improvement and improved member satisfaction.
|State||State Agency||MCO||FMS||Participant Advisory Group||Other|
|Arizona||AHCCCS||United Healthcare Community Plan||Consumer Direct||Arizona Bridge to Independent Living||---|
|Bridgeway Health Solutions|
|Massachusetts||Massachusetts Executive Office of Health & Human Services||CCA||Cerebral Palsy of Massachusetts||The Arc of Massachusetts||---|
|Fallon Community Health Plan||Consumer Quality Initiative|
|New Mexico||New Mexico Human Services Department||---||Xerox State Healthcare, LLC||Mi Via Advisory Committee||Consumer Direct (Provider Agency)|
|Tennessee||TennCare Long-Term Services & Supports||Amerigroup||PPL||Southeast Tennessee Area Agency on Aging & Disability||---|
|Texas||Texas Health & Human Services Commission||HealthSpring||In-Home Attendant Services||ADAPT||---|