DOI: 10.3886/e193644v1
title: RTC-CL 2018-2023 Community Living & Employment: National Study of Needs and Characteristics of Families and Individuals with Disabilities (FINDS)

description: The Research and Training Center on Community Living and
Participation for Persons with Intellectual and Developmental Disabilities
(RTC/CL) at the University of Minnesota’s (UMN) Institute on Community
Integration (ICI) 5-year cycle of funding ran from September 2018 – September
2023. There are 7 studies in this cycle. 

 

<br><br>Caregivers of
individuals with IDD often have different experiences than those of other
groups as they provide supports over the lifespan of their family
member. The Family & Individual
Needs for Disability Supports (FINDS) Survey was originally developed in 2010.
A second administration occurred in 2017. The 2023 survey is revised version of
this survey. The FINDS sought to identify factors related to economic,
physical, and social/emotional caregiver outcomes.<br><br>Study Purpose:

The
University of Minnesota (UMN) and The ARC of the United States collaborated to
lift up the voice of the direct support workforce. The aim of this study was to
understand the life experiences of caregivers and their family members with
IDD, the most difficult or stressful aspects of caregiving, the most rewarding
aspects of it, and what would make life easier or better for caregivers, their
families, and people with IDD they support.
description: N/A
description: Response Rates: N/A
description: Presence of Common Scales: N/A
description: The
method of data collection was a convenience sample. The intended survey
participant was a family member or an unrelated caregiver (such as a friend or
a neighbor) who provides primary and frequent support to a person with an
intellectual or developmental disability (IDD) living in the United States or
its territories.

 

<br><br>The
criteria for study involvement were: 
 <br>

1.
<b>NOT</b> having their primary
relationship with an individual or individuals with IDD as a direct support
professional or paid caregiver for that individual(s).<br>

<br>AND

<br><br>2. In the last 12
months, providing support to any child/children under the age of 18 with IDD.
This care was defined as more than the typical care required for a child of
his/her age. It included an ongoing medical condition or emotional,
behavioral, or developmental concerns.

<br><br>AND/OR

<br><br>3. In the last 12
months, providing support to an adult relative or friend 18 years or older with
intellectual or developmental disabilities to help them take care of
themselves. This care was defined as helping with personal needs or household
chores. It also included managing a person's finances, arranging for outside
services, or visiting regularly to see how they are doing. This person
need not live with the participant.

<br><br>Data
were collected from caregivers across the United States and territories via a
web-based survey. The survey was open January 9, 2023, to February 10, 2023. Recruitment
was done via social media, through The ARC’s network of state and local
chapters, and by sending information to other national organizations such as the
Association of University Centers on Disabilities (AUCD), Parent-to-Parent
organizations, etc. <br><br>There were 7,031 surveys in Qualtrics. There were 49
surveys that failed captcha, 1,403 were answered by Bots, 106 were ballot
stuffing, 583 did not answer screening question 1 (were not unpaid caregivers),
547 failed screening question 1, 254 failed screening questions 2 (in the last
12 months did not provide support to any child/children under the age of 18
with intellectual and developmental disabilities) and 3 (in the last 12 months
did not provide support to any adult relative or friend 18 years or older with
intellectual or developmental disabilities), 34 were duplicate testers, and 966
had incomplete surveys. There were 3,118 that met study criteria and had valid
data. This was the analytic sample.
description: Caregivers of individuals with intellectual and developmental disabilities (IDD) in the United States. Smallest Geographic Unit: State
description: web-based survey; Web-based survey; Paper/pencil. Surveys
included English, Spanish, French and Chinese (paper/pencil only) versions.<br><br>The variables in the dataset include original survey questions and
computed race indicators.<br>