Experiences with Long-Term Services and Supports in Illinois

This report documents the experiences of family caregivers and older adults in Illinois as they navigate the process of obtaining long-term services and supports (LTSS). The study involved qualitative research, including in-depth interviews with 107 caregivers and older adults across five counties, aimed at understanding disparities in access to and quality of LTSS. The interviews explored the journey through three phases: the onset of illness, the search for help, and the receipt of care. Participants reported significant challenges, including a lack of information about available resources and the financial burden associated with LTSS. The report highlights the emotional and logistical difficulties faced by caregivers, who often must balance work with caregiving responsibilities. It also discusses the importance of cleanliness, staff professionalism, and community support in the decision-making process for nursing home placements. The findings aim to identify areas for improvement in LTSS access and quality, with implications for policy and practice in Illinois and beyond.