FINDS Community Report 2017: Family & Individual Needs for Disability Supports

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Families play an important role in providing care to their family members with IDD. Supports provided vary widely and include interventions to support people in areas of behavior, health and medical supports (such as therapies), transportation, assistive technologies, and assistance with daily living activities such as preparing meals, personal care, shopping, etc. The Family and Individual Needs for Disability Supports (FINDS) survey was initially conducted by The Arc of the United States in 2010. It was updated in 2017 through a collaboration between the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc. The purpose of FINDS is to understand the experiences of families who provide supports to a family member with IDD. An estimated 43.5 million people provide support to a family member who is aging or who has a disability (National Alliance for Caregiving, 2015).

Important questions exist about families who provide such support: 1. What are the challenges families face meeting the support needs of their family member? 2. What are the economic implications of caregiving? 3. How does caregiving affect caregivers and what supports do they need? Better understanding the experiences and needs of caregivers can help policy makers and other support caregivers in this important role.

Caregiving and Planning for the Future for People With Disabilities

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One of the great challenges facing today’s caregivers for people with intellectual and developmental disabilities is balancing the responsibility of meeting their loved one’s present needs with establishing a plan to ensure their continued care and supports in the future.

In order to fully understand the many issues faced by caregivers across the country, The Arc of the United States and the University of Minnesota conducted the Family and Individual Needs for Disability Supports (FINDS) survey. More than 3,000 individual caregivers completed the survey, the results of which reveal a national community of family members and friends who are already stretched thin by current caregiving duties and who have little to no plans for how to support their loved one in the future.

Employment of People with Intellectual and Developmental Disabilities: 2017 Snapshot

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Despite recent progress in employment legislation and local-level employment initiatives, finding and securing meaningful and community-based employment opportunities continues to be a major challenge for people with intellectual and developmental disabilities (IDD) – including people with autism, Down syndrome, and other diagnoses across the country. The Family & Individual Needs for Disability Supports (FINDS) survey asked caregivers about some of the underlying causes for the large gaps that exist in employment outcomes for people with disabilities. The results indicate that there is a significant need to immediately address and improve practices that facilitate education and employment for people with IDD.

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

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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.

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

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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.

FINDS Community Report Data Tables

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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.

The 2010 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. View the Data Tables to get a more robust analysis of the data on family caregivers collected throughout the survey.

Abuse of Children with Intellectual and Developmental Disabilities

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This brief report provides information on the abuse of children with IDD, including statistics on the risk of abuse, how to identify abuse, and recommendations on preventing and reporting abuse.

Pathways to Justice: Get the Facts on Interacting With Your State’s Protection and Advocacy Organization (P&A)

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This fact sheet describes state Protection and Advocacy (P&A) organizations and how they can potentially help a person with IDD who is involved in the criminal justice system.

The Arc’s Justice Advocacy Guide

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This guide provides an overview of how professionals can assist those with IDD who become caught up in the justice system as victims or suspects.