Skip to content

Resources for Caregivers

This collection of educational resources aims to address health and wellness needs faced by people with intellectual and developmental disabilities (IDD) and their caregivers.

Helping Individuals with IDD Live Healthier Lives

Individuals with IDD may struggle with key practices such as mask-wearing and social distancing, and their caregivers may find it difficult to teach these important skills. These potentially life-saving skills are critically important, as people with IDD are six times more likely to die if they contract COVID-19, compared to the general population (Association of American Medical Colleges).

The resources presented below have been created for use by friends, family, and caregivers of individuals with IDD who may be involved in full-time or incidental care.   

Skills for Health, Wellness, and Beyond

There is a fundamental need for resources to help families and caregivers teach essential skills to those in their care in order to help them maintain health, wellness, and autonomy. Topics covered in the training resources include mask desensitization, social distancing, and more. These skills are relevant during a pandemic, but their application can extend to other common challenges for individuals with IDD. The success of these training resources builds upon a solid, yet accessible training module that prepares family caregivers to teach and transfer skills to individuals with IDD.

Behavioral Skills Teaching

Teaching a person new skills can be a challenge for caregivers. Behavioral Skills Training (BST) is a user-friendly, effective, and research-tested teaching method that can be used for learners of all ages. The BST guide was created to give caregivers the ability to teach a range of new skills effectively and consistently. Learning to use BST is an important first step for teaching health and wellness skills, as well as other key capabilities.

BST Overview [PDF]

BST Task List Example [PDF]

BST Task List Handout [PDF]

BST Caregiver Checklist [PDF]

Learn How to Use BST
Wearing and Tolerating a Mask 

Individuals with sensory issues related to IDD might find masks extremely uncomfortable and difficult to tolerate. The skills gained from these training resources will help caregivers to acclimate individuals with IDD to mask-wearing, as well as other health devices like glasses, dental equipment, and hearing aids. 

Mask Toleration Handout-English [PDF]

Mask Toleration Handout-Spanish [PDF]

Watch this video on YouTube
Social Distancing and Respecting Boundaries

Social distancing is a key skill required to reduce the transmission of illness. The same concepts can be applied to learning about personal space needs and navigating boundaries in relationships. By developing these skills in the training modules, caregivers can reduce anxiety for both themselves and the people they care for. 

Establishing Boundaries Handout [PDF]

Social Distancing Diagram [PDF]

Watch this video on YouTube
The Chain of Infection

Dr. Beth Kiss explains the language and concepts of the chain of infection and how germs that cause illness are transmitted, in addition to how to protect yourself and others from contagious illnesses.

Watch this video on YouTube
Understanding Signs of Illness and Wearing PPE

Dr. Beth Kiss explains how to recognize signs of illness in a group care setting. She reviews health and hygiene measures as well as the elements of the process for putting on (donning) and taking off (doffing) personal protective equipment (PPE) including a gown, gloves, and a mask.

Watch this video on YouTube
Understanding Vulnerable Populations

Dr. Amy Jerum discusses populations that may be at higher risk of contracting COVID or another contagious illness, and how this impacts individuals with developmental disabilities as well as their caregivers in home and congregate care settings. She identifies ways that caregivers can safely manage the stress and fatigue of working in a high-risk environment while protecting vulnerable populations at home.

Watch this video on YouTube
Health and Hygiene Considerations for Congregate Care Settings

Dr. Amy Jerum shares strategies to reduce the spread of community-acquired illnesses (such as the common cold, flu, RSV, and COVID) for individuals living in congregate care settings including group homes. She reviews behaviors that can be adopted by both caregivers and individuals with IDD to reduce the risk of transmission among high-risk populations.

Watch this video on YouTube
Understanding the Impact of COVID-19 on Individuals with IDD

The COVID-19 pandemic profoundly impacts individuals living in group care facilities. In this video, Dr. Beth Kiss interviews Ruth Benjamin, Director of Health Management and Research at Heritage Christian Services, and Jessica, a direct support provider at a Rochester, NY area group home. They discuss the impact of the COVID-19 pandemic on people with intellectual and developmental disabilities living in a residential care setting. Topics include reviewing ways staff has worked to keep individuals connected with their families and their communities during periods of isolation, as well as health and cleaning protocols at the facility.

Watch this video on YouTube

About the Resources

The educational resources and supplemental materials above were designed and developed by the Golisano Institute for Developmental Disability Nursing, in collaboration with faculty from the Wegmans School of Nursing at St. John Fisher College and Daemen College. The training materials were created with input from stakeholders, including service providers, families and individuals with IDD, and staff from congregate care settings.

The publication of this content is supported by funds from the New York State Developmental Disabilities Planning Council. The opinions, results, findings, and/or interpretation of data contained therein are the responsibility of the Contractor and do not necessarily represent the opinions, interpretation, or policy of the New York State Developmental Disabilities Planning Council.