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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Aging & Disability
ASPE produces policy research focusing on older adults, Medicare, dual-eligible beneficiaries, individuals with disabilities, Alzheimer’s disease, dementia, and caregivers. Resources relating to aging and disability include advance directives, end-of-life care planning, elder abuse, long-term services and supports (LTSS), home and community-based services (HCBS), and healthy aging.
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NAPA
The National Alzheimer's Project Act (NAPA) creates an important opportunity to build upon and leverage HHS programs and other federal efforts to help change the trajectory of Alzheimer's disease and related dementias (AD/ADRD) with input from a public-private Advisory Council on Alzheimer's Research, Care, and Services.
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Advanced SearchASPE 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.
ASPE Issue Brief
Health Insurance Coverage Among Working-Age Adults with Disabilities: 2010-2018
For working-age adults with disabilities, consistent access to health insurance may be critical to continuity of care and good health outcomes. We tracked changes in health insurance coverage for this population from 2010-2018.
ASPE Issue Brief
COVID-19 Intensifies Home Care Workforce Challenges: Policy Perspectives Issue Brief
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ASPE Issue Brief
COVID-19 Intensifies Home Care Workforce Challenges: Agency Perspectives Issue Brief
June 1, 2021
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COVID-19 Intensifies Home Care Workforce Challenges
June 1, 2021
Link to Printer Friendly Version in PDF Format (66 PDF pages)
ASPE Issue Brief
The Impact of COVID-19 on Medicare Beneficiaries with Dementia Issue Brief
April 6, 2021
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ASPE Issue Brief
Characteristics of Homebound Older Adults: Potential Barriers to Accessing the COVID-19 Vaccine Issue Brief
April 6, 2021
Link to Printer Friendly Version in PDF Format (11 PDF pages)
KEY POINTS
Research Summit on Dementia Care 2020: Persons Living with Dementia Stakeholder Recommendations
This is the PDF version of the Research Recommendations from the Persons Living with Dementia Stakeholder Group prepared for the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers (also called the Research Summit on Dementia Care).
Economic Hardship and Medicaid Enrollment in Later Life: Assessing the Impact of Disability, Health, and Marital Status Shocks
Richard W. Johnson and Melissa M. Favreault
Urban Institute
January 2021
Link to Printer Friendly Version in PDF Format (50 PDF pages)