Evaluation of Telehealth Services on Mental Health Outcomes for People with Intellectual Disabilities

Evaluation of Telehealth Services on Mental Health Outcomes for People with Intellectual Disabilities
START Telehealth Study logo

What is this study about?

This study will compare START services when delivered in person or by telehealth. 

In this study, people in the telehealth group will meet with their START team over the phone or computer for therapeutic coaching and outreach. Everyone will get intake, assessments and crisis response in person. 

We want to know if both ways of providing START services reduces the use of crisis services and improves mental health. The information from this study can be used to improve telehealth services for people with intellectual and developmental disabilities and mental health conditions (IDD-MH) outside of START.

We know not all things work for all people. We will examine outcomes for people:

  • With greater level of intellectual disability,
  • In urban vs. rural communities, and 
  • Across racial, ethnic and linguistic groups. 

Findings will determine the effectiveness of telehealth START practices across racial, ethnic, linguistic, and disability groups, as well as living contexts. 

The Spanish version of this video can be found here


How does this study partner with people with IDD, their family members, and providers?

Our study team works together with community members to make sure this study is accessible, feasible, and focuses on outcomes that are important to people with IDD and their families. 

Our Leadership Team, the group of people who run the study, includes a co-investigator with lived experience of IDD-MH.

The Engagement Team meets two times a month. They create study materials. The team includes four people with IDD and mental health service experiences, two family caregivers, and a START provider.

Our National Advisory Council meets four times a year to give us feedback. They include:

  • 5 people with IDD-MH
  • 5 family caregivers
  • 7 mental health clinicians
  • 7 researchers
  • 6 representatives from policy, advocacy, or healthcare organizations

We are engaged with START programs across the US to deliver START in-person or by telehealth.
 


What is telehealth?

Telehealth is a way to provide services to people using video, internet, or phone. Our team worked together with people with IDD, family caregivers, and providers to make sure START telehealth services work for enrollees and their families. 

This video shares what providers can to do make sure people with IDD can get good mental health care on telehealth.

With the help of research partners, the study team developed telehealth guidelines to provide best practices for activation of telehealth services and supports for people with intellectual and developmental disabilities and mental health service experiences (IDD-MH). It is available for download. 

For a Spanish version of this video, click here

Download Telehealth Guidelines PDF


What is the Person Experiences Interview Survey (PEIS)? 

The PEIS allows for persons with IDD to provide direct feedback about their mental health service experiences. This video is designed to describe the PEIS and explain how to use it.

The PEIS is free to use.  Here are examples of what to expect from the PEIS below.

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If you would like the PEIS and users guide, please complete this form. 

Request the PEIS



Acknowledgements

The materials shared on this page were developed as part of the research study “Evaluation of Telehealth Services on Mental Health Outcomes for People with Intellectual and Developmental Disabilities” funded by the Patient Centered Outcomes Research Institute (Grant #14MN50).  

Principal Investigator and Co-Principal Investigators
This work was led by Joan B. Beasley, University of New Hampshire (PI), Luke Kalb, Kennedy Krieger Institute (co-PI), Jessica Kramer, University of Florida (co-PI). 

Co-Investigators 
Tawara D. Goode, Georgetown University   
Andrea Caoili, University of New Hampshire  
Micah Peace Urquilla, University of New Hampshire  

Collaborators
Richard Tessler, University of Massachusetts Amherst 

Study Team at the Institute on Disability, University of New Hampshire 
Luke Reynard, MBA, Financial Manager 
Alex Parrish-Valliere, Grant Manager  
Janie Poncelet, Research Assistant  
Morgan Futrell, Research Assistant  
Ann Klein, Data Management 

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Logo for University of Florida College of Public Health and Health Professions Department of Occupational Therapy
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