Graduation Year


Document Type




Degree Name

Doctor of Public Health (Dr.PH.)

Degree Granting Department

Community and Family Health

Major Professor

Oliver Tom Massey, Ph.D.

Co-Major Professor

Bruce Lubotsky Levin, DrPH

Committee Member

Julie A. Baldwin, Ph.D.

Committee Member

Mary I. Armstrong, Ph.D.

Committee Member

Elizabeth A. Perkins, Ph.D.

Committee Member

Amie Lulinski, Ph.D.


Disability, family caregiver, long-term care, best practices


Background: 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. Medicaid is the primary funding source for supports and services for adults with IDD. Growing Medicaid expenditures and goals to improve quality of care are driving more states to move their Medicaid fee-for-service programs into a managed care model. The stated goals of Medicaid managed long-term services and supports (MLTSS) are to improve care coordination and access to care while controlling costs, but the evidence regarding these outcomes is limited and mixed. Given the level of uncertainty about MLTSS for adults with IDD and their family caregivers, best practices recommendations have been produced by the federal government and advocacy agencies to help guide future MLTSS implementation efforts. These best practice recommendations combined with the continued expansion of MLTSS in the states, provided an opportunity to further explore implementation of MLTSS to inform both policy and practice. One state which recently reformed their Medicaid program to MLTSS and which has been referred to as a bellwether state is Kansas. The MLTSS program in Kansas, titled “KanCare”, is the first for adults with IDD to integrate across health, behavioral health, and LTSS while also contracting through three private-for-profit managed care organizations (MCOs).

Aims: The objective of this study was to describe the current implementation of MLTSS for adults with IDD and their family caregivers in one state, 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; 3) To understand how family caregivers and their roles were recognized in MLTSS for adults with IDD.

Methods: A single case embedded design case study approach was used with in-depth semi-structured interviews completed with state/regional level representatives (N=13), MLTSS service coordination providers (N=7), and family caregivers of adults with IDD (N=11). Data collection and analysis were guided by the unified theory of family quality of life (FQOL) and Bronfenbrenner’s ecological model. The framework method was used to structure the data analysis process. Member checking was completed to ensure accuracy of results.

Findings: Regarding aim one, 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 (MCOs) were continuing to work on expanding provider networks and to provide additional services to address health disparities amongst 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 two, 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 three, participants acknowledged the important role of family caregivers. At the current stage of the KanCare implementation, participants reported 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 and 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.

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Public Health Commons