Families of children with autism spectrum disorder (ASD) play a central role in selecting interventions for their children. Despite the importance of understanding the factors that motivate early decisions about treatment, the literature has concentrated little attention on how and why parents of young children with ASD make decisions about services and supports. Using a collective case study design informed by a diverse sample, this study found a heavy reliance on formal and informal sources of support in guiding parents' early treatment decisions for their young children with ASD. The Internet also served as a primary source of informational support to families. Findings highlight the importance of family support initiatives including peer-to-peer family mentoring and decision support aides to assist families in critically evaluating online and print information regarding ASD.

People with intellectual and developmental disabilities (IDD) often rely on Medicaid-funded services and supports to facilitate their daily living. The financial investment for these services is significant, yet little work has been conducted to understand how these investments affect life outcomes. This pilot study used a novel data integration approach to offer initial insights about how Medicaid expenditures relate to outcomes using Medicaid claims data, results of the National Core Indicators consumer survey, and data from the Supports Intensity Scale (SIS). Findings suggested that subpopulations of people with IDD who also had high behavioral needs or high medical needs had significantly higher expenditures than individuals with more typical SIS-assessed support needs. Regression analyses suggested mixed outcomes based on the factors we considered, including a finding that people with IDD who lived in sponsored residential care homes were more likely to engage in inclusive activities in the community than those who lived in larger congregate settings, or those who lived in a family home. Results of this pilot, when brought to scale, will be useful in examining the performance of state IDD service systems over time.

As a core unit of our society, the family provides support for all its members. Due to the nature of their disabilities, people with intellectual and developmental disabilities (IDD) often receive emotional, physical, and material support from their families across the life course. During the National Goals 2015 Conference, three goals were identified that will lead to a better understanding of families and maximize their capacity, strengths, and unique abilities to support, nurture, and facilitate opportunities for family members who have a disability. The three goals are to (1) develop a better understanding of the complex family structures in the United States and the best practices for supporting them; (2) extend our knowledge on how families are or might be supported by their natural communities, outside the purview of IDD systems; and (3) synthesize support practices, implementation strategies, and outcomes for supporting families. This article describes these three goals related to supporting families across the life course and provides a rationale, areas of research to address the goals, and implications for policy and practice for each goal.

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Case management (CM) is one of the most commonly used services by individuals with intellectual and developmental disabilities (IDD), but little is known about the workers who provide CM. This study used a mixed methods approach to gain understanding of the CM workforce in one U.S. state. An online survey was completed by 35 IDD service directors (87.5% of directors in the state); and 113 CMs and CM supervisors participated in semistructured interviews and focus groups. Results indicated an annual crude separation rate of 28.2%, and participants often complained that turnover resulted in caseload sizes that prevented optimal outcomes for people with IDD. A limited applicant pool, duties focused on regulatory compliance, and inadequate wages were cited as major challenges for CMs.