Effect of paid family care (vs aides) on Medicaid waiver participants w/ IDD across the lifespan

Home and community-based services are the most common support for people with Intellectual and/or Developmental Disability (I/DD) who otherwise would require facility-level care. Many state Medicaid waivers allow participants to choose to hire family as direct support personnel to meet their care needs at home and in the community rather than a professional aide. Ability to hire family increased during the Covid-19 pandemic through state policy changes, and yet we do not know how involving paid family affects the ability for people with I/DD to remain at home. The objectives of this study are to use North Carolina (NC) as a case to elucidate the experiences of waiver participants with I/DD (Innovations Waiver participants). With no national data fields systematically identifying self-direction status or who is paid for personal care, foundational state-level work is required to understand people with I/DD’s experiences with self-direction. First, we will describe prevalence and dynamics of paid family care using Medicaid administrative data over the past 9+ years, including patterns by self-direction or not, by individual and geographic factors and by era (pre-post Covid-19 (Aim 1). Second, qualitative approaches will center the voices of people with I/DD and their families to obtain their perspectives on what is gained and what is lost from self-directed care including paid family care (Aim 2). Specifically, photo elicitation, case study, and focus group interviews will examine the lived experience of accessing and receiving care through the Innovations Waiver according to 1) individuals with I/DD, 2) their parent/partner/guardian/unpaid family caregiver, 3) their paid family caregivers, 4) their paid aide, and 5) Innovations Waiver experts. Third, we will estimate the comparative effectiveness of paid family care versus paid aide care only on person-centered outcomes (e.g., home time, preventive care) and on potential harms (potentially harmful medications, injurious falls, mistreatment) (Aim 3). We hypothesize that waiver participants with paid family care will have better person-centered outcomes and no increase in harms compared to those with paid aides alone. Effects of self- direction will also be explored. By using a convergent parallel mixed-methods process we will integrate results to paint a full picture of the comparative effectiveness of paid family care and self-direction from childhood to older adulthood, including identification of any harms. The results of this 5-year R01 study will be immediately applicable to state Medicaid office benefit design and inform strategies to optimize quality of care and life for people living with I/DD from childhood throughout the lifespan. Results from the North Carolina case will also position us to pursue a national study, given knowledge gained along with emerging efforts to identify “self- direction” in national CMS data sets. Examining paid family care and self-direction’s effects across the lifespan aligns with NIA’s strategic goal to improve the health, well-being, and independence of adults as they age. Project Number: 1R01AG092489-01A1 | Fiscal Year: 2026 | NIH Institute/Center: National Institute on Aging (NIA) | Principal Investigator: Courtney Van Houtven | Institution: DUKE UNIVERSITY, DURHAM, NC | Award Amount: $678,231 | Activity Code: R01 | Study Section: Organization and Delivery of Health Services Study Section[ODHS] View on NIH RePORTER: https://reporter.nih.gov/project-details/11293128