Six advocacy organizations representing various populations of LTSS users across the life-span were interviewed regarding their perspectives on PD-MLTSS. While five of the six advocacy groups were only able to discuss PD-MLTSS in very general terms, it was clear that few had either advocacy or personal involvement with the state or MCOs regarding PD-MLTSS. As a result, the perspectives from these five organizations were neutral or somewhat positive towards MLTSS. The one advocacy organization that was directly involved with participants in a PD-MLTSS program gave a vastly different perspective--one that felt participants' views were being solicited on a very limited basis and were marginalized in any discussion regarding the operations of PD-MLTSS.
In an effort to try and better understand the experiences of individuals in PD-MLTSS, NRCPDS asked the NPN, a national advocacy organization for individuals enrolled in PD-LTSS programs, to query their members regarding their experiences with PD-MLTSS programs. Ninety-three members were contacted but only four (n=4) responded within the timeframe. Overall, this small group felt they had little to no direct participation in the development of PD-MLTSS in their state.
According to these four NPN respondents, if they ever had a problem or question regarding MLTSS, they did not feel they had the ability to directly access either the state or the MCO. All of the respondents indicated that the initial orientation and enrollment was confusing, complex, and duplicative. When asked what would they improve, the respondents indicated that expanded participant representation on advisory groups to the state and MCO would enable a more direct pathway to provide input and greater participant voice in development, implementation and management of the system.