2010 FINDS National Survey Family and Individual Needs for Disability Supports: Technical Report

Most of the growth in services in the last half century has been to support people living in their own or a family home. However, between 2009 and 2011, the economic difficulties of the prolonged national recession began to slow the growth or in some places to result in actual reductions in publicly funded supports to families throughout the United States. Family caregivers play critically important roles in supporting the well-being of people with ID/DD. This is true for family members who are the primary caregiver as well as for those whose family member with ID/DD live in their own homes or in supported residential settings. As our society continues to depend on the active engagement of family caregivers for the support of individuals with ID/DD, it is important to understand and respond to the needs of those caregivers. In 2010 The Arc of the United States conducted a national internet survey that aimed to capture the perspectives of people with ID/DD and their family caregivers. The Family and Individual Needs for Disability Supports (FINDS) survey focused on issues including educational, housing, employment and support needs of people with ID/DD and their families. Family caregivers in 2010 reported substantial ongoing challenges to providing lifelong supports to family members with intellectual or developmental disabilities.

Still in the Shadows with Their Future Uncertain: A Report on Family and Individual Needs for Disability Supports (FINDS), 2011

Despite gains in many areas, overall the results from the FINDS survey show that our efforts as a nation have fallen short of the vision of an America where people with intellectual and developmental disabilities are accepted and have the supports they need to live to their full potential in the community.

The Family and Individual Needs for Disability Supports (FINDS) survey was conducted online from July 22, 2010 to October 31, 2010. The survey was widely disseminated through a variety of groups, including: the Association of University Centers on Disabilities, the American Association on Intellectual and Developmental Disabilities, the American Network of Community Options and Resources, the National Association of Councils on Developmental Disabilities, Self-Advocates Becoming Empowered, the National Council on Independent Living, Best Buddies, Easter Seals, the Autism Society of America and state and local chapters of The Arc. Families from all 50 states and DC completed surveys. Nearly 5,000 caregivers responded (4,962). The vast majority of caregiver respondents were family members (95%) who are living with their family member with disabilities (75%), and who are female (89%), Caucasian (90%) and married (75%). The results are representative of the people who heard about the survey and responded and may not be representative of all people with disabilities and their families. Data analysis was performed by Lynda Anderson, Sheryl A. Larson, Allise Wuorio and K. Charlie Lakin of the Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

National Center on Education Statistics (NCES)

The National Center for Education Statistics (NCES) is the primary federal entity for collecting and analyzing data related to education.

Civil Rights Data Collection (CRDC)

The CRDC is the premier source for data on enrollment demographics, discipline, and more in the nation’s nearly 100,000 public schools.

IDEA Section 618 Data Products: State Level Data Files

There are 12 data collections authorized under the Individuals with Disabilities Education Act (IDEA) Section 618. These include educational environments (such as inclusive or segregated settings) , exiting (such as with a regular high school diploma); Discipline; Assessment (including for students with the most significant cognitive disabilities); and more.

U.S. Department of Education (ED)

ED is the Nation’s premier source of information on pre-school, K-12, and post secondary legislation, regulations, guidance, and other policy documents.

Position Statement: Education

Position statement of The Arc and the American Association on Intellectual and Developmental Disabilities on education.