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

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.

Infusing intellectual and Developmental disability training into Medical School curriculum: a Pilot intervention.

PURPOSE: Despite the rising prevalence of developmental disabilities (DD) in the US, there remains insufficient training for healthcare professionals to care for this medically underserved population - particularly adults. The National Inclusive Curriculum for Health Education (NICHE) aims to improve attitudes and knowledge towards people with intellectual and developmental disabilities (PWIDD); herein we describe one such intervention. METHOD: The intervention integrated didactic, panel presentation and clinical skills components into a 2nd year medical school curriculum.  The didactic session, covering  health and assessment of PWIDDs, history of IDD, stigma, etc., was co-taught by a developmental pediatrician, family medicine physician and social worker.  A panel of 3 adult self-advocates (SAs) with DD and a parent of a child with DD spoke about their lived experiences.  One week later, students practiced taking clinical histories of SAs within small group settings with adult PWIDDs, facilitated by medical school faculty. Students completed the NICHE Knowledge(49 items) and Attitudes (60 items) surveys. The evaluation analyzed pre/post intervention differences in a) knowledge and attitude scores overall and b) by student age, gender, intended medical specialty, and prior experiences with PWIDDs. Open-ended comments were analyzed with content analysis. RESULTS: Overall Knowledge scores increased from pre-to posttest (n = 85; 65[19] vs. 73[17], p = 0.00), while Attitudes score improved (i.e., decreased) (n = 88; 0.55 [.06] vs. 0.53 [0.06]); p = 0.00).  Higher pretest knowledge was found among female identified students (vs. others; p = 0.01) and those knowing > = 5 PWIDD (vs < 5; p = 0.02).  Students characterize their IDD training and experience prior to intervention as 'lacking' and described the sessions as effective. CONCLUSIONS: A brief (4 hours total) intervention was associated with modest but significant improved knowledge and attitudes towards PWIDDs. Replication and sustainability of this and other NICHE interventions are needed to fill gaps in PWIDDs' health care.

Impact of the COVID-19 Pandemic on the Behavioral Health of People With Intellectual and Developmental Disabilities.

OBJECTIVE: The authors examined how the COVID-19 pandemic affected the behavioral health of people with intellectual and developmental disabilities (IDD). METHODS: A modified version of the Coronavirus Health Impact Survey-Adapted for Autism and Related Neurodevelopmental Conditions was sent to the authors' clinical networks and IDD-affiliated organizations from March to June 2021. RESULTS: In total, 437 people with IDD or their caregivers responded to the survey. Diagnoses included intellectual disability (51%) and autism spectrum disorder (48%). More than half (52%) of respondents reported worsened mental health. Losing access to services correlated with declining mental health. Interventions suggested to improve behavioral health included more time with friends and family (68%), more time outdoors (61%), and access to community activities (59%). CONCLUSIONS: COVID-19 affected the behavioral health of individuals with IDD. Survey results highlight the opportunity to leverage physical activity and pandemic-safe social supports as accessible means to mitigate gaps in services.