Medicaid long-term services and supports and caregiving needs of caregivers of individuals with intellectual and developmental disabilities

Ariana M. Mastrogiannis, Caren Steinway, Telmo C. Santos, Jack Chen, John Berens, Thomas Davis, Michelle Cornacchia, Jason Woodward, Ilka Riddle, Brittany Spicer, Charmaine Wright, Lee A. Lindquist, Sophia Jan*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n = 405) of individuals with intellectual and developmental disabilities across four states (NY, OH, TX, and PA) completed an online survey. Results: Caregivers reported a moderate degree of burden and susceptibility of stress-induced health breakdown. Despite controlling for the activities of daily living of the care recipient, caregivers of individuals with Medicaid Waiver services reported greater difficulty managing medications (p =.013) and finding paid help (p <.001) than caregivers of individuals without services.

Original languageEnglish (US)
Article numbere13289
JournalJournal of Applied Research in Intellectual Disabilities
Volume37
Issue number5
DOIs
StatePublished - Sep 2024

Funding

The research presented in this article was fully funded supported by the Rx Foundation and the Patrick and Catherine Weldon Donaghue Medical Research Foundation. The authors would like to thank Dr. Mary Ciccarelli from Indiana University for her help with survey development and support throughout this project and Dr. Michelle Katzow, Toyosi Oluwole, and Andrea Zuzarte from Cohen Children's Medical Center for their feedback on the manuscript.

Keywords

  • adults with intellectual and developmental disabilities
  • caregiver burden
  • long-term care planning

ASJC Scopus subject areas

  • Education
  • Developmental and Educational Psychology

Fingerprint

Dive into the research topics of 'Medicaid long-term services and supports and caregiving needs of caregivers of individuals with intellectual and developmental disabilities'. Together they form a unique fingerprint.

Cite this