RTC-CL and The Arc Seeking to Survey Family Caregivers: Deadline Extended to April 30

In 2010, The Arc and ICI partnered to conduct a groundbreaking survey of people with intellectual and developmental disabilities (IDD) and their families nationwide, and discovered many urgent unmet needs for support. The results provided unique insight into growing gaps in education, employment, and other life-span activities that exist between persons with IDD and peers, further informing dialogue and policy changes at Federal and State levels.

ICI's Research and Training Center on Community Living (RTC-CL)  is now collaborating with The Arc on a follow-up survey, the 2017 Family and Individual Needs for Disability Supports (FINDS) Survey.  Its goal is to learn more about the experiences of those who provide support to a family member with IDD. The Arc is seeking to survey thousands of caregivers nationwide, and the RTC-CL will analyze the survey data and summarize the findings in a joint report to be published later this year.

"Family caregivers provide most of the support for people with IDD living with their families and for those living in their own homes," says Lynda Anderson,  who oversees the project's survey material. "Understanding the experiences and needs of family caregivers is important to best support families and family resilience. This is going to be even more important as the aging population increases the demands on family caregivers and as the service system shifts its focus to more individualized services and supports from congregate-type settings." 

Thousands of families and other caregivers make it possible for most people with IDD to live and participate in community life throughout the U.S. These caregivers are not part of the formal system of human service agencies, but without their assistance many people with IDD might be at risk for out-of-home placement in congregate care living situations. As this group of caregivers grows, it is increasingly important to learn how to sustain them in their vital caregiving role.

Caregivers (family or otherwise) aged 18+ who provides frequent, primary support to someone with IDD are asked to take this critical survey online . The deadline for participation has been extended to April 30.