National Core Indicators: Ten Years of Collaborative Performance Measurement

Families are critical in the provision of lifelong support to individuals with intellectual and developmental disabilities (IDD). Today, more people with IDD receive long-term services and supports while living with their families. Thus, it is important that researchers, practitioners, and policy makers understand how to best support families who provide at-home support to children and adults with IDD. This article summarizes (a) the status of research regarding the support of families who provide support at home to individuals with IDD, (b) present points of concern regarding supports for these families, and (c) associated future research priorities related to supporting families.

Section: Support Needs and Experiences Of Families And Sihlingsmentioning

confidence: 96%

Families of Individuals With Intellectual and Developmental Disabilities: Policy, Funding, Services, and Experiences

Hewitt

Agosta

Heller

et al. 2013

“…First, the considerable diversity in the importance and expressions of spirituality within our sample highlight the importance of finding out what matters most to young people. Unfortunately, most existing assessments overlook altogether this dimension of the lives of people with IDD (e.g., Walker, Kortering, Fowler, Rowe, & Bethune, 2013) or only touch on it by asking about a very narrow set of expressions (e.g., attendance at a faith community, involvement in religious activities; Bradley & Moseley, 2007;Thompson et al, 2004). Recent calls have been made to develop tools and processes that can help discern whether and how spiritual supports and connections might be established for individuals with IDD (Carter, 2013;Gaventa, 2006).…”

Section: Implications For Practicementioning

confidence: 99%

In Their Own Words: The Place of Faith in the Lives of Young People With Autism and Intellectual Disability

Liu¹,

Carter²,

Boehm³

et al. 2014

Although the prominence of spirituality and religious connections among the people of the United States is well documented, little is known about the place of faith in the lives of youth with developmental disabilities. In this qualitative interview study, we examined the perspectives of 20 young people with intellectual disability or autism on their faith, spiritual expressions, and disability. Participants identified key spiritual expressions and themes reflecting the importance of faith in their lives. They also shared perceptions of their disability in the context of their faith, highlighting affirmation and acceptance of their disability. We offer recommendations to families, faith communities, and service systems for supporting the spiritual formation, expression, and connections of young people with disabilities.

“…The National Core Indicators (NCI) project, a U.S. Department of Health and Human Services's Administration on Intellectual and Developmental Disabilities project of national significance, has measured IDD long-term support and service system quality outcomes in the United States since 1997 (Bradley & Moseley, 2007). The purpose of NCI is to identify and measure core indicators of performance of state developmental disabilities service systems.…”

Section: Introductionmentioning

confidence: 99%

Responsiveness to Self-Report Interview Questions by Adults With Intellectual and Developmental Disability

Stancliffe¹,

Tichá

Larson

et al. 2015

An important line of research involves asking people with intellectual and developmental disability (IDD) to self-report their experiences and opinions. We analyzed the responsiveness of 11,391 adult users of IDD services to interview questions from Section 1 of the 2008-2009 National Core Indicators-Adult Consumer Survey (NCI-ACS). Proxy responses were not allowed for the selected questions. Overall, 62.1% of participants answered the questions and were rated by interviewers as understanding the questions and as responding consistently. Most participants responded in an all-or-none fashion, answering either all or most questions or few to none. Individuals with milder levels of IDD and with speech as their primary means of expression were more likely to answer the questions and provide a scoreable response. Interviewer ratings of interviewees' answering questions, understanding of questions, and consistent responding were each related to responsiveness.