Journal article
Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities
JAMA health forum, v 5(8), 242201
02 Aug 2024
PMID: 39093588
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
ImportanceAt least 10 million people in the United States have an intellectual and/or developmental disability (IDD). People with IDD experience considerably higher rates of poor overall health, chronic conditions including diabetes, mental health challenges, maternal mortality, and preventable deaths. This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD and their caregivers/partners and identifies critical policy opportunities and challenges in achieving these goals. A community-led consensus agenda offers a foundation for focusing research, improving data collection and quality measurement, enhancing coverage and payment for services, and investing in a prepared clinical workforce and infrastructure in ways that align with lived experiences and perspectives of community members. ObservationsPeople with IDD prioritize holistic health outcomes and tailored supports and services, driven by personalized health goals, which shift over their life course. Caregivers/partners need support for their own well-being, and easy access to resources to optimize how they support loved ones with IDD. Development of an adequately prepared clinical workforce to serve people with IDD requires national and regional policy changes that incentivize and structure training and continuing education. Ensuring effective and high-value coverage, payment, and clinical decisions requires investments in new data repositories and data-sharing infrastructure, shared learning across public and private payers, and development of new technologies and tools to empower people with IDD to actively participate in their own health care. Conclusions and RelevanceConsensus health priorities identified in this project and centered on IDD community members' perspectives are generalizable to many other patient populations. Public and private payers and regulators setting standards for health information technology have an opportunity to promote clinical data collection that focuses on individuals' needs, quality measurement that emphasizes person-centered goals rather than primarily clinical guidelines, and direct involvement of community members in the design of payment policies. Clinical education leaders, accrediting bodies, and investors/entrepreneurs have an opportunity to innovate a better prepared health care workforce and shared data infrastructure to support value-based care programs.
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Details
- Title
- Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities
- Creators
- Hoangmai H. Pham - Inst Except Care, 1717 K St NW,Ste 900, Washington, DC 20006 USATeal W. Benevides - Augusta University HealthMay-Lynn Andresen - Inst Except Care, 1717 K St NW,Ste 900, Washington, DC 20006 USAMadelyn Bahr - Inst Except Care, 1717 K St NW,Ste 900, Washington, DC 20006 USAJoanne Nicholson - Brandeis UniversityTim Corey - Seattle UniversityJennifer E. Jaremski - Augusta University HealthKristen Faughnan - Brandeis UniversityMiriam Edelman - Long Term Care Community CoalitionAlexis Hernandez-Hons - University of Garden CityCarolyn Langer - University of Massachusetts Chan Medical SchoolStephen Shore - Adelphi UniversityKarla Ausderau - University of Wisconsin–MadisonHelen Burstin - College Station Medical CenterSusan T. Hingle - SIU MedicineArethusa S. Kirk - MemorialCare Health SystemKhaliliah Johnson - University of North Carolina at Chapel HillVincent Siasoco - Montefiore Medical CenterEmma Budway - Patient Advocate FoundationMeelin Dian Chin Kit-Wells - University at Buffalo, State University of New YorkLaura Cifra-Bean - Syndrome Assoc Northeast Ohio, Independence, OH USAMarco Damiani - AHRC New York City, New York, NY USAShelby Eisenchenk - Patient Advocate FoundationChester Finn - Self Advocacy Assoc New York State, New York, NY USAMerrill Friedman - Elevance Hlth, Indianapolis, IN USAMorenike Giwa Onaiwu - Patient Advocate FoundationMartha Haythorn - Patient Advocate FoundationTracy Jirikowic - University of WashingtonMargaret C. Lo - University of FloridaColeen Mackin - Patient Advocate FoundationThomas Mangrum - Patient Advocate FoundationZanetha Amani Matisse - Patient Advocate FoundationSteven Merahn - Community PartnersAdam L. Myers - University of Garden CityPatricia D. Nobbie - Elevance Hlth, Indianapolis, IN USAJulie H. Siebert - National Committee for Quality AssuranceMichael G. Skoch - Centene Corporation (United States)Ivanova Smith - Patient Advocate FoundationB. J. Stasio - Self Advocacy Assoc New York State, New York, NY USAMaura K. Sullivan - Arc of the United StatesHuan Vuong - Patient Advocate FoundationMax Wheeler - Patient Advocate FoundationTyler G. Wigington - Patient Advocate FoundationCharlotte Woodward - Patient Advocate Foundation
- Publication Details
- JAMA health forum, v 5(8), 242201
- Publisher
- American Medical Association
- Number of pages
- 12
- Grant note
- EASC-IDD-00241 / Eugene Washington PCORI Engagement Award Arnold Ventures to Institute for Exceptional Care Patient-Centered Outcomes Research Institute (PCORI)
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- A.J. Drexel Autism Institute
- Web of Science ID
- WOS:001283059700004
- Other Identifier
- 991022202118904721
UN Sustainable Development Goals (SDGs)
This publication has contributed to the advancement of the following goals:
Source: SDGs in the Output
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Health Care Sciences & Services
- Health Policy & Services
- Public, Environmental & Occupational Health