Participant-directed long-term services and supports (PD-LTSS) assists people of all ages, across all types of disabilities, to maintain their independence and determine for themselves what mix of services and supports works best for them. Since 2001, changes in federal law, regulation, and policy have promoted the growth of publicly funded PD-LTSS. All states have at least one publicly funded PD-LTSS program offering participants employer authority to select, hire, fire and manage individuals to help them with activities of daily living. Forty-three states have at least one program that allows individuals budget authority to manage not only their worker but also purchase other goods and services to help meet their needs.1 PD-LTSS programs have demonstrated their effectiveness in reducing participants' unmet personal care needs, improving participant health outcomes, and increasing participant satisfaction when compared to traditional agency-directed service models.2 Furthermore, research suggests that PD-LTSS programs can achieve cost savings by avoiding or delaying the need for institutional care.3, 4
Since 2000, more states have begun to explore the integration of health and long-term services and supports (LTSS) for elders and persons with disabilities through various types of managed care programs. The rationale for such an integrated approach is to enable better care coordination, continuity of care when transitioning from acute to LTSS, and increased cost effectiveness of care delivery. Increased state use of managed LTSS (MLTSS) programs has also been suggested as a promising solution for state LTSS rebalancing efforts.5 Whatever the reason, from 2004 to 2012, the number of state Medicaid programs with MLTSS grew from eight to 16 and the number of individuals receiving MLTSS increased from 105,000 to 389,000. By 2014, the number of states projected to have MLTSS programs is 26.6 Of the current 16 states that have MLTSS programs, 13 offer participant direction.7
Even before the growth of publically funded participant-directed MLTSS (PD-MLTSS), the compatibility of the concepts of managed care and participant direction has been questioned. Early exploratory studies of managed care organizations (MCOs) found mixed attitudes towards PD-MLTSS. A 2002 study by Meiners and colleagues found that some MCOs saw participant direction as a means to improve service quality and efficiency, as well as increasing member independence. At the same time, Meiners et al. (2002) (and a companion study by Mahoney et al. in 2003) reported that some MCOs expressed concerns on whether participants were up to the task of managing their care.8, 9
An early study remarked that MCOs were driven by characteristics critical for successful PD-MLTSS, not the least of which was the MCOs' focus on participant outcomes.10 An accompanying study of aging and disability experts expressed concerns that MLTSS would be dominated by a medical model perspective and thereby remove choice and control from participants.11 One early commentator sums up these early studies with the observation that managed care and participant direction may be compatible, but "the devil is in the (program design) details."12 In 2003, Kodner articulated some of the program design details that could promote a compatible relationship. These program elements included the use of a value-driven assessment process, structured opportunities for participant feedback and contribution to program design, implementation, evaluation, information and assistance services, and member and MCO staff training, among others.13
To gain a more thorough understanding of how MLTSS programs have implemented participant direction, researchers from the National Resource Center for Participant-Directed Services (NRCPDS) conducted an in-depth examination of PD-MLTSS programs in five states: Arizona, Massachusetts, New Mexico, Tennessee, and Texas. These states were included in this study for the following reasons:
Arizona has a mature MLTSS program and is looking to expand participant direction for elders and persons with disabilities by promoting the Agency with Choice model where the participant shares responsibility with an agency for the hiring and management of their worker.
Massachusetts has three decades of experience operating Medicaid PD-LTSS programs and has operated a managed care program with a participant-directed option since 2004.
New Mexico is finalizing a comprehensive reform of its MLTSS with an employer authority and a budget authority PD-LTSS option beginning in January 2014. New Mexico's well-established budget authority program, Mi Via, is being incorporated under the new PD-MLTSS program for the Disabled and Elderly, Brain Injury, and Acquired Immunodeficiency Syndrome (AIDS) populations.
Even though it only recently added MLTSS, Tennessee has approximately 15 years of experience contracting with MCOs to manage its Medicaid services. Tennessee has offered participant direction since 2010 and has the most extensive contract requirements for PD-MLTSS.
Texas has operated an experienced PD-MLTSS program and intends to expand the participant-directed option statewide.