Project Summary

There are over 7 million people with an intellectual/developmental disability in the United States. Many of these people are cared for by family members. People with intellectual/developmental disability are typically followed by many doctors, experience more frequent health problems, and earlier death than individuals without intellectual/developmental disability. This is especially true in times of emergency. The health and well-being of the family members caring for these individuals is very important, as it can impact the health of their family member with intellectual/developmental disability. However, family members caring for loved ones with intellectual/developmental disability frequently feel stressed and overwhelmed with their responsibilities. Planning for emergencies that may happen in the future can ease some of the stress caregivers feel and positively impact the health and well-being of people with intellectual/developmental disability and their family members.

The research team is working with four health systems across the country to enroll 1000 family caregivers of people with intellectual/developmental disability. The individuals with intellectual/developmental disability must be at least 18 years old living in non-institutional settings for their caregivers to participate in the study. The team is randomly assigning family caregivers to one of two groups. Each group has an equal number of family caregivers. Family caregivers in one group get access to an online planning tool, called Plan Your Lifespan (PYL), in addition to regular care coordination with their state or county disability services provider. Family caregivers in the other group only receive access to online materials not related to planning for the future in addition to regular care coordination with their state or county disability services provider. The team will compare changes in family caregiver burden and well-being, in addition to planning behaviors, communication about plans, and well-being of the person with intellectual/developmental disability. Family caregivers will be asked to complete surveys at the time they agree to participate in the study, and at 3 additional times over the course of eighteen months.

The team is working with advocacy organizations, individuals with intellectual disability and their caregivers, organizations providing direct services to individuals with intellectual disability, professional organizations, and groups focused on actionable policy change and dissemination of findings on the project.

Project Information

Sophia Jan, MD, MSHP
The Feinstein Institute For Medical Research
$5,565,189 *

Key Dates

60 months *
2022

*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.

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Last updated: August 5, 2022