Hospitalized People with IDD Need their Caregivers: They Aren’t Visitors

View presentation on HealthMatters Program YouTube Playlist
Date and time: Tuesday, July 28, 2020 1:00 pm CDT
Duration: 55 minutes
Handouts and Resources:

  1. PowerPoint Presentation-Sarah Ailey
  2. Factors Related to Complications Among Adult Patients With Intellectual Disabilities Hospitalized at an Academic Medical Center
  3. Using Mock Tracers to Evaluate Care of Patients with Intellectual Disabilities, Part 1
  4. Using Mock Tracers to Evaluate Care of Patients with Intellectual Disabilities, Part 2
  5. Specific standards of care for adults with intellectual disabilities
  6. Health Advisory: COVID-19 Updated Guidance for Hospital Operators Regarding Visitation
  7. ADA Compliance with Visitations in Healthcare Facilities: Coronavirus Pandemic Guidance for Advocates

Overview: This presentation will provide an overview on the need to implement hospital visitation policies for people with IDD. Best practices policies that advocate for the rights of people with IDD to have a caregiver with them while hospitalized to help make decisions and provide reassurance and calmness is a matter of life and death. Implementation of strategies that support healing for people with IDD if caregivers cannot be present will also be discussed.

Learning Objectives:
  1. Provide an overview of hospital visitation policies for people with IDD.
  2. Discuss the best practice policies that advocate for the rights of people with IDD to have a caregiver with them while hospitalized.
  3. Delineate strategies that support healing for people with IDD if caregivers cannot be present in a hospital.

Presenter: Sarah Ailey, PhD, APHN is a professor in the Department of Community, Systems, and Mental Health Nursing at Rush University, Chicago, IL. She is president of the Alliance for Disability in Health Care Education (ADHCE) since 2019. Her research and scholarly practice are concentrated on improving the lives of people with disabilities, in particular intellectual disabilities, by translating research into practice within community and inpatient hospital settings. She is currently investigating the effect of the Steps to Effective Problem-solving (STEPS) program in group homes, funded by an R01 grant from the Eunice Kennedy Shriver Institute. She, along with Drs. Molly Bathje and Tamar Heller, were funded by the Agency for Healthcare Research and Quality to hold the PATH-PWD (Partnering to Transform Healthcare with People with Disabilities) Conference in 2017. Along with Dr. Beth Marks she was an author of the White Paper on Inclusion of Students with Disabilities in Nursing Educational Programs for the California Committee on Employment of People with Disabilities (CCEPD). Ailey has been on the Board of the Alliance for Disability in Healthcare Education since 2015 and has been the Vice-President since 2017. She recently received a “Pinnacle Nurse Leader” Award  Power of Nursing Leadership Annual Meeting Chicago and was the recipient of the 2019 Outstanding Leadership and Service Award – Annual Conference of the American Academy of Developmental Medicine and Dentistry.


COVID-19 Webinar Series is presented by the HealthMatters Program, Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago with continued partnership with Project SEARCH, a leader in securing competitive employment for people with disabilities based at Cincinnati Children’s Hospital Medical Center and with Aspire an Illinois organization providing services to children and adults with developmental disabilities, their families and their communities.


  • There is no cost for these webinars.
  • CEUs are not offered for these webinars.
  • Webinars and materials will be recorded and archived on YouTube.
  • For disability accommodations email Jasmina Sisirak ( at least 10 days before the webinars.
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