Family Caregivers of Individuals with Intellectual and Developmental Disabilities: Experience in States with Medicaid Managed Care Long-Term Services and Supports Heather J. Williamson, OT, MBA 1, Maureen Fitzgerald, MSW 2, Annie Acosta, MSW 2, Tom Massey, PhD 1,3 1 College of Public Health, Department of Community and Family Health, University of South Florida, 2 The Arc, 3 College of Behavioral and Community Sciences, Department of Child and Family Studies, University of South Florida Presentation is funded by the USF COPH Student Honorary Award for Research & Practice “SHARP” award program. Project is funded by the USF COPH, Department of Community and Family Health Student Research Grant. INTRODUCTION Majority of adults with intellectual and developmental disabilities (I/DD) continue to require ongoing support from a family caregiver Family support services build on family strengths and resources to help family caregivers maintain role while supporting quality of life of person with I/DD Family caregivers can access family support services through Medicaid, state funds, and DD funds States moving from fee-for-service to managed care for long-term services and supports (LTSS) to reduce cost while improving access to services Disability advocates concerned about managed care because LTSS are not part of the medical model Information about LTSS in a managed care model is limited PURPOSE Given reliance on family caregivers, managed long-term services and supports (MLTSS) need to be responsive to both needs of individual with I/DD and the family caregiver Goal of this study was to understand experiences of family caregivers of individuals with I/DD receiving LTSS in a managed care model METHODS Sixteen family caregivers from four states (AZ=3, MI=4, NC=6, WI=3) with established MLTSS programs for individuals with I/DD completed in-depth semi- structured telephone interviews between May and August 2013 Family caregivers all female, age range (mean age=57.9, SD=10.8), individual with I/DD age range (mean age=29.2, SD=10.4) Family caregivers asked about their experiences receiving family support services and with MLTSS overall Interviews transcribed, coded, and analyzed for themes with member checking preliminary results RESULTS “If you look managed care up in a dictionary I bet, or on the internet, it is going to tell you probably something like, you know, an organized set of supports and services. Does in reality that happen? Not here! Not if you use multiple services and not if you want something that is a little more independent.” Managed Care Meaning After state budget cuts there was a shift in LTSS availability and flexibility Managed Care Access to Services “So, you get the sense of the family, that your person that you’re taking care of has to fit their box as opposed to having, shall we say, a sort of, some thoughts about what would really work well during the day for an individual.” Managed Care Coordination Decline in quality of care coordination after budget cuts “When the monies were less.. there was mass exodus of highly-skilled, experienced people who had been in the system as support coordinators for…many years…it just drove them out, and in order to meet the requirements of the managed care system, the agency had to hire new people, and they’re pretty green…They may have lots of energy and enthusiasm, but they basically don’t have the years of experience and knowledge… so, the ability for the support coordinator to really be a social worker for that family is pretty nil.” AZ CONCLUSIONS Family support service availability is vital for family caregivers to maintain their caregiving roles Mixed results whether or not managed care improves care coordination and access to services; further exploration of MTLSS is needed Given their critical role in disability service systems, family caregivers should be involved in the planning, implementation, and evaluation of MLTSS programs Managed Care Meaning “To me, it means that someone in an office might be making decisions without knowing my son or without knowing what kinds of services he would need, and there might not be flexibility to tweak, you know, the system as for what he might need.” MI Managed Care Access to Services Managed Care Coordination Reductions in types of services available and flexibility in services with budget cuts Care coordination about paperwork processing not problem solving Managed Care Meaning “To me, managed care is having all the functions that he needs in place.” WI Managed Care Access to Services Managed Care Coordination Better than it used to be, paid transportation Managed care puts less demands on family Managed Care Meaning “Managed Care to me is – Well first of all, it’s belittling…It’s a dictatorship of what you deem medically necessary for me and my family.” “I call them the Gestapo. They've just come in and totally wiped us out and everything positive we had, it's gone…with this managed care, it is just gone. ” NC Managed Care Access to Services Difficulty to obtain eligibility, reduction in providers, reduction in staff pay, increased staff turnover, and reductions in access to LTSS “They have limited services for us in the last year. They took power April 1, 2012…and by September we couldn't even breathe.” Managed Care Coordination Care coordination about processing paperwork, poor communication from MCO, and lack of advocacy “The advocacy piece is completely gone and …for most families, that is going to be the biggest loss… because they don’t have someone to explain to them. “