Commentary: Determining Economic Factors That Matter to People With Intellectual and Developmental Disabilities and Their Caregivers: A Process Framework.

BACKGROUND: The 2020-2029 strategic plan for the Patient-Centered Outcomes Research Trust Fund calls for addressing data infrastructure gaps that are critical for studying issues around intellectual and developmental disabilities (I/DD). Specifically, the plan calls for data collection on economic factors that affect person-centered approaches to health care decision-making. Among people with I/DD and their caregivers, such economic factors may include financial costs of care, decreased opportunities for leisure and recreation, income losses associated with caregiving, and foregone opportunities for skill acquisition or other human capital investments. OBJECTIVE: This commentary supports responsiveness to the Patient-Centered OutcomesResearch Trust Fund (PCORTF) calls by conceptualizing and operationalizing a framework for identifying preferences on economic factors that are relevant to people with I/DD and their caregivers. MAIN ARGUMENTS: The framework outlined in this commentary addresses barriers to data collection that hinder measure development in the study of I/DD. This work is significant and timely given the continued movement to integrate and maintain people with I/DD within communities and recent methodological advances for eliciting preferences among people with I/DD. RELEVANCE TO THE SPECIAL ISSUE: Readers will be introduced to a framework for building data capacity in the study of economic outcomes among a population that is a high research priority for federal funding agencies. This commentary aims to be useful to researchers in planning, developing, and initiating projects in this area.

Exploring the Experiences of Families of Latino Children Newly Diagnosed With Autism Spectrum Disorder.

OBJECTIVE: Understanding families' experiences from their initial developmental concerns through the first several months after autism spectrum disorder (ASD) diagnosis might help explain persistent disparities in age of diagnosis for low-income Latino children and those whose parents speak a primary language other than English. We explored these experiences among Latino parents of children recently diagnosed with ASD to develop a richer understanding of this critical juncture. METHOD: We conducted semistructured interviews with Latino parents of children diagnosed with ASD in the previous 3 months who were receiving follow-up care through a large, hospital-based outpatient practice. Interviews were recorded, transcribed verbatim, translated, and analyzed using an iterative process. RESULTS: Twenty parents participated in a semistructured interview approximately 3 months after their child was diagnosed with ASD. All respondents were female and Latina, 90% spoke Spanish, and 95% of children received Medicaid. We identified the following 3 themes from their experiences: (1) When parents first shared their concerns about their child's development with professionals, they felt unheard. (2) Parents were surprised that the diagnostic process for ASD relied on parental description of child development and behavior and observation of the child, not on medical tests. (3) Receiving an ASD diagnosis was a life-altering event for parents, and how that diagnosis was communicated by clinicians had a significant impact on families. CONCLUSION: Parents of young Latino children identified several barriers throughout the process of ASD identification and diagnosis that have important implications for improving clinician communication with families.

Disability Rights and The Common Good.

Convinced that the family is the natural and fundamental group unit of society and is entitled to protection by society and the State, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyments of the rights of persons with disabilities...¹