Overview: Previous research has shown a strong association between self-directed services and the improvement in participant well-being. However, little is known about the well-being of the family members engaged in these programs or the aspects of program operation most associated with their well-being. Given the growing population of individuals with long-term support needs and the view of self-direction as a desired program, states could benefit from evidence regarding those program features that promote well-being and identify family caregivers best suited for different roles and responsibilities in these programs. Thus, this project is investigating the well-being of family members who are engaged in self-directed HCBS waiver programs as either the paid caregiver or the authorized representative. The research aims at identifying the following issues; 1) how family relationships and the family environment or culture are associated with the operation of self-directed waiver programs, 2) which aspects of the family environment or culture and waiver program operation predict family members psychological and financial well-being and physical/mental health, and 3) whether the way the program operates exacerbates or buffers the impact of the family environment on family members well-being. The sample includes participants from Virginia and West Virginia and the research is gathering data through telephone interviews with family caregivers.
Employer of Record Role: To examine how the employer of record (EoR) role relates to well-being and how well-being is influenced by the relationship between the EoR and program personnel, we conducted structured telephone interviews with parents of children and adults with disabilities (N=60) who were enrolled in Virginia’s Elderly or Disabled with Consumer Direction Medicaid waiver. Interviews gathered data about consumer characteristics, the types of tasks performed by the EoR and their difficulty, program operation in terms of the quality of the relationships between the EoR and program personnel, and EoR well-being in terms of life satisfaction, mental health and financial well-being. Parents ranged in age from 25 to 73 years (Mean=42.2, SD=8.2) and were overwhelmingly female (91.7%). Most were white (75%) and 14.3% were Black. Parents rated two tasks as most difficult: identifying consumer needs, preferences, and personal goals, and getting authorization for services. For tasks related to hiring attendants, finding suitable applicants was the most difficult. Greater task difficulty was associated with poorer financial well-being, while more years spent in the EoR role was associated with poorer mental health. Regression models revealed that higher quality relationships with program personnel moderated the negative impact of high role duration on life satisfaction and mental health. Further, after controlling for task difficulty and high role duration, higher quality relationships between the EoR and service facilitator predicted greater financial well-being.
The telephone interviews also asked EoRs to provide recommendations for program improvement. Three themes emerged. First, respondents felt the waiver should help caregivers connect with others in their situation. Peer networks are seen as a critical method for family members to connect with others who are facing the same challenges and garner support and information. One family caregiver said, “I have been active in a social online group of parents in similar circumstances as I am. They have been amazing, encouraging and extremely helpful.” Second, respondents recommended that the information on the rules and regulations governing the program be clearer and updated in the website. Third, it was recommended that information about the program be more widely and consistently disseminated so caregivers can know to apply for benefits.
Attendant Role: Data collection is ongoing with family caregivers in the role of attendant. Attendants include both parents caring for their children with disabilities and various family members caring for an elderly relative. Preliminary analyses show emerging differences between those family members who are attendants and those who are EoRs. Family members in the attendant role, compared to those in the EoR role, are less well educated and less likely to be employed, yet are more likely to have some form of medical training. Similar to the EoRs, attendants emphasize the need for more emotional support but also the need for more training on how to provide care.
Work will focus on data analysis and dissemination. Analysis activities will focus on the attendant data from both states and submitting articles to journals on both the EoR analyses and the attendant analyses. A mixed method paper with Boston College will also be written (see below). Finally, we are considering a brief report on recruitment challenges and new approaches to gathering data from family caregivers.
Warfield, M.E., & Naim Ali, H. (2019). Predictors of well-being among parents serving as the employer of record in a consumer directed Medicaid waiver program. Manuscript in preparation.
Warfield, M.E. & Naim Ali, H. (2018). “Predictors of caregiver wellbeing in a consumer directed Medicaid waiver program.” State of the Science Conference (June). Washington, DC.
Warfield, M.E. & Naim Ali, H. (forthcoming). “Well-being of Parents Serving as the Employer of Record in a Consumer-directed Medicaid Waiver Program.” Poster Presented at the AAIDD Conference (June). Twin Cities, MN.