This report describes insights gained from key informant interviews and an ASPE-hosted listening session on short-term opportunities for improving patient-centered outcomes research (PCOR) data infrastructure that addresses the needs of individuals with intellectual and developmental disabilities (ID/DD).
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Intellectual & Developmental Disabilities (ID & DD)
Reports
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The Role of Health and Human Service Providers in Preventing Fetal Alcohol Spectrum Disorders Research Brief
This brief reviews the role of health and human service providers in preventing Fetal Alcohol Spectrum Disorder.Related Products:
Research Brief
State Responses to FASD: Effective Strategies and Ongoing Challenges Research Brief
This brief synthesizes effective state and local level strategies for prevention, identification and intervention of Fetal Alcohol Spectrum Disorder.Related Products:
Report
Considerations for Building Federal Data Capacity for Patient-Centered Outcomes Research Related to Intellectual and Developmental Disabilities
This report describes the current state of Patient-Centered Outcomes Research (PCOR) data infrastructure resources related to Intellectual and Developmental Disabilities (ID/DD), highlights data issues in the ID/DD research landscape that require more research, and identifies opportunities to enhance data infrastructure to improve PCOR for ID/DD.
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ASPE Issue Brief
Child and Adolescent Mental Health During COVID-19: Considerations for Schools and Early Childhood Providers
COVID-19 pandemic’s social restrictions have prompted a surge in the mental health needs of children of all ages. Nationwide 4.3 million children/adolescents have been diagnosed with COVID-19 as of August 2021, and many of them have returned to early childhood and school settings. Schools and early childhood programs have long been essential settings for delivery of mental health services.
Caregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities
This is the PDF version of a Pre-Summit Activity Paper prepared for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).
ASPE Issue Brief
Caregiving for People with Non-Alzheimer's Dementias Issue Brief
This is the PDF version of a Reference Paper prepared for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).
Report to Congress
The Supply of Direct Support Professionals Serving Individuals with Intellectual Disabilities and Other Developmental Disabilities: Report to Congress
U.S. Department of Health and Human Services
An Estimate of the Number of Persons with Developmental Disabilities Receiving Supplemental Security Income Benefits and Their Characteristics
This paper was prepared as part of the Project to Design a Survey of Persons with Developmental Disabilities. The overall purpose of this project was to develop a national survey design that would provide data on a nationally representative sample of persons. This paper was conducted to develop a National Survey of Mentally Retarded and Developmentally Disabled Persons in Community Settings.
An Analysis of Federal and State Policies Affecting Services to Mentally Retarded and Other Developmentally Disabled Persons: State Perspectives Final Report
U.S. Department of Health and Human Services