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.

Mothers with Intellectual/Developmental Disabilities and Behavioral Health Conditions and Community Experts Provide Recommendations for Treatment/Services, Systems, and Research.

Mothers with intellectual and developmental disabilities (IDD) are vulnerable to perinatal complications and adverse outcomes. Their vulnerabilities may also be exacerbated by co-occurring behavioral health (BH) conditions. Their wellbeing may be compromised by a lack of tailored treatments or by treatments and services that are inaccessible, irrelevant, and/or ineffective. A five-session virtual Ideas Lab workshop series was implemented to bring together diverse community experts (n = 30), including mothers with IDD/BH, to discuss the experiences of mothers and set priorities for treatment/services, systems, and research. Participants completed background and evaluation surveys and brainstormed, grouped, and ranked items of importance, which fell into two broad categories: (1) cross-cutting themes drawn from lived experience with recommendations applicable to all substantive domains (i.e., accessibility, diversity, adverse experiences and trauma, and trust) and (2) substantive themes with specific recommendations for treatment/services and systems (i.e., services and supports, peer support, provider practices and training, and systems navigation/transformation). Research recommendations were generated in all discussions and emerged in relation to all themes, underscoring the importance of including mother-driven questions and priorities in research agendas and strengthening researcher training and skills to engage mothers with IDD/BH and other community members actively, and in meaningful ways.

Disproportionate Preterm Delivery Among Black Women: a State-Level Analysis.

Preterm delivery occurs at extraordinarily higher rates among Black women than among women of any other race or ethnicity. For those children who survive, many face a lifetime of health and developmental challenges as well as difficulties in school and life. Previous studies have provided substantive evidence that the preterm delivery disparity experienced by Black women is associated with ongoing distress caused by racism. Our study examines rates of preterm delivery for Black women in the USA to determine the level of risk associated with living in specific states. Using a logistic regression model, we examined the impact of the delivery state, controlling for known clinical, economic, and demographic risk factors. We found that 32 of the 35 states included in our analysis were associated with a statistically significantly increased risk of preterm delivery among Black women, as compared to the state with the lowest preterm delivery rate for Black women. These findings allowed us to organize states into a continuum of preterm delivery risk. Because of the harmful effects of preterm delivery and its disproportionate impact among Black women and infants, we recommend that a measure of preterm delivery be included in any state plan to assess, intervene in, and monitor racial disparities.

Sustaining and spreading quality improvement: Decreasing intrapartum malpractice risk.

BACKGROUND: Malpractice liability is an ongoing problem in obstetrics. However, developing, sustaining, and spreading effective interventions is challenging. The aim of this study is to examine the spread and sustainability of a multilevel integrated practice and coordinated communication model 66 months after its original implementation. METHODS: Data on labor and delivery patients from 37 hospitals (5 beta sites and 32 expansion sites) were analyzed for the 81-month time period from January 2010 through September 2016. RESULTS: High-risk occurrence rates per 1000 live births decreased by over 70% at both beta and expansion sites. The likelihood of a high-risk occurrence was statistically significantly lower during the final study period than in the preintervention period at both beta sites (odds ratio [OR] = 0.218; p < .0001) and expansion sites (OR = 0.288; p < .001). CONCLUSION: The multilevel integrated practice and coordinated communication model was successfully spread and sustained. Key elements contributing to this success included developing and maintaining evidence-based guidelines, ensuring leadership buy-in and support, collecting and reporting performance measures, holding teams accountable, providing training, and ensuring transparent communication.