Date Presented 4/1/2017
States are reforming their Medicaid programs to a managed care approach. Opportunities exist for the field of occupational therapy to help inform current and future managed care reform efforts. Occupational therapists can contribute to encouraging stakeholder engagement and informing family caregiver support efforts.
Primary Author and Speaker: Heather Williamson
Contributing Authors: Elizabeth Perkins, Amie Lulinski, Mary Armstrong, Julie Baldwin, Bruce Levin, Oliver Massey
PURPOSE: Individuals with intellectual and/or developmental disabilities (IDD) are experiencing longer life expectancies, with the majority requiring the ongoing support of family caregivers into adulthood. Growing Medicaid costs and goals to improve quality of care are driving more states to move their Medicaid fee-for-service programs into a managed care model called managed long-term services and supports (MLTSS). The objective of this study was to describe the current implementation of MLTSS for adults with IDD and their family caregivers in Kansas. Study aims were as follows: (1) to understand the rationale behind and what actually happened with MLTSS implementation for adults with IDD in Kansas, (2) to understand how service coordination providers and family caregivers perceived care coordination and access to services for adults with IDD in MLTSS, and (3) to understand how family caregivers and their roles were recognized in MLTSS for adults with IDD.
DESIGN AND METHODS: A qualitative embedded case study design was used. Data collection and analysis were guided by the unified theory of family quality of life and Bronfenbrenner’s ecological model. In-depth semistructured telephone interviews were completed with study participants. Thirty-one individuals volunteered for the study, including representatives of statewide or regional groups (n = 13), service coordination providers (n = 7), and family caregivers (n = 11). The framework method was used to structure the data analysis process. Member checking was completed to ensure accuracy of results, and Cohen’s kappa calculated at κ = .73 demonstrated adequate interrater reliability.
RESULTS: Regarding Aim 1, respondents identified reducing costs and improving care quality as the rationale behind MLTSS, but these were outcomes not yet realized given the early stages of implementation. At the time of this study, the managed care organizations were continuing to work on expanding provider networks and to provide additional services to address health disparities among individuals with IDD. Study participants identified the importance of adequate planning and stakeholder engagement to reduce confusion and fear when transitioning into MLTSS.
Addressing Aim 2, timely and accessible consumer education, clear care coordination processes, and provider network adequacy were identified as important to influence the challenges experienced to date in care coordination and access to services. Regarding Aim 3, participants acknowledged the important role of family caregivers. At the current stage MLTSS implementation, participants reported a lack of formal processes for family caregiver assessment and a need for more proactive family support services planning.
CONCLUSION: Lessons learned from this implementation experience include the importance of having long planning timelines and including stakeholder feedback into the design of MLTSS programs. Care coordination holds promise to better integrate care, but more research is needed to understand best practices for the provision of care coordination in MLTSS. In order to address access to services, MLTSS programs will need to work to build provider capacity and provider networks. MLTSS programs will also need to formally recognize the role of family caregivers by incorporating the use of family caregiver assessments to proactively plan for support needs.
IMPACT STATEMENT: Addressing best strategies for long-term care and supporting family caregivers will remain ongoing priorities due to the growing aging and disability population. Occupational therapists are well positioned to inform best practices for care coordination and support for family caregivers.
References
Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework method for analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology, 13, 117. https://doi.org/10.1186/1471-2288-13-117
Williamson, H. J., Perkins, E. A., Fitzgerald, M., Acosta, A., Agrawal, J., & Massey, O. T. (2016). Family caregivers of individuals with intellectual and developmental disabilities: Experiences in states with Medicaid managed care long-term services and supports in the United States. Journal of Policy and Practice in Intellectual Disabilities, 13, 287–296. https://doi.org/10.1111/jppi.12198
