Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities: A Community-Led Agenda.

Autor:	Pham HH; Institute for Exceptional Care, Washington, DC., Benevides TW; Institute of Public and Preventive Health, Augusta University, Augusta, Georgia., Andresen ML; Institute for Exceptional Care, Washington, DC., Bahr M; Institute for Exceptional Care, Washington, DC., Nicholson J; Institute for Behavioral Health, Schneider Institutes for Health Policy and Research, Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts., Corey T; Seattle University, Seattle, Washington., Jaremski JE; Institute of Public and Preventive Health, Augusta University, Augusta, Georgia., Faughnan K; Institute for Behavioral Health, Schneider Institutes for Health Policy and Research, Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts., Edelman M; Long Term Care Community Coalition, New York, New York., Hernandez-Hons A; Unaffiliated., Langer C; University of Massachusetts Chan Medical School, Worcester, Massachusetts., Shore S; Adelphi University, Garden City, New York., Ausderau K; The Waisman Center and University of Wisconsin, Madison., Burstin H; Council of Medical Specialty Societies, Washington, DC., Hingle ST; Southern Illinois University School of Medicine, Springfield, Illinois., Kirk AS; UnitedHealthcare State and Community., Johnson K; University of North Carolina, Chapel Hill., Siasoco V; Rose F. Kennedy Center, Montefiore Medical Center, New York, New York., Budway E; IDD Self-Advocate, Arlington, VA., Chin Kit-Wells MD; University of Buffalo School of Dental Medicine, New York, New York., Cifra-Bean L; Down Syndrome Association of Northeast Ohio, Independence., Damiani M; AHRC New York City, New York., Eisenchenk S; IDD Self-Advocate, Arlington, VA., Finn C; Self-Advocacy Association of New York State, New York., Friedman M; Elevance Health, Indianapolis, Indiana., Onaiwu MG; IDD Self-Advocate, Arlington, VA.; Advocacy Without Borders and AJ Drexel Autism Institute, Philadelphia, Pennsylvania., Haythorn M; IDD Self-Advocate, Arlington, VA., Jirikowic T; University of Washington, Washington, DC., Lo MC; Department of Medicine, University of Florida College of Medicine, Jacksonville, Florida., Mackin C; IDD Self-Advocate, Arlington, VA., Mangrum T; IDD Self-Advocate, Arlington, VA., Matisse ZA; IDD Self-Advocate, Arlington, VA., Merahn S; Partnership Solutions, Nashville, Tennessee., Myers AL; Unaffiliated., Nobbie PD; Elevance Health, Indianapolis, Indiana., Siebert JH; National Committee on Quality Assurance, Washington, DC., Skoch MG; Centene/Sunflower Health Plan, Lenexa, Kansas., Smith I; IDD Self-Advocate, Arlington, VA., Stasio BJ; Self-Advocacy Association of New York State, New York., Sullivan MK; The Arc of Massachusetts, Waltham, Massachusetts., Vuong H; IDD Self-Advocate, Arlington, VA., Wheeler M; IDD Self-Advocate, Arlington, VA., Wigington TG; IDD Self-Advocate, Arlington, VA., Woodward C; IDD Self-Advocate, Arlington, VA.
Jazyk:	angličtina
Zdroj:	JAMA health forum [JAMA Health Forum] 2024 Aug 02; Vol. 5 (8), pp. e242201. Date of Electronic Publication: 2024 Aug 02.
DOI:	10.1001/jamahealthforum.2024.2201
Abstrakt:	Importance: At 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. Observations: People 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 Relevance: Consensus 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.
Databáze:	MEDLINE
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