Reinvigorating the Promise of the National Database for Autism Research (NDAR) to Advance Autism Knowledge.

The National Institute of Mental Health created the National Database for Autism Research (NDAR) to accelerate autism knowledge through data sharing and collaboration. However, our experience using NDAR reveals systematic challenges across several aspects of data submission, selection, management, and analysis that limit utility of this resource. We describe our NDAR experience in an ongoing project examining autism intervention outcomes among marginalized racial, ethnic, and gender groups.

Older adults with communication disabilities and their use of communication support at doctor's visits: a nationally representative study.

Purpose: Older adults with communication disabilities (CDs) experience barriers to receiving care and face a paucity of accommodations for their disability. Utilizing someone that supports communication with healthcare providers (communication support persons) may be a way that this group self-supports their disability. We examined if this utilization was independently associated with CDs among older adults.

Disparities in Smoking and Heavy Drinking Behaviors by Disability Status and Age of Disability Onset: Secondary Analysis of National Health Interview Survey Data.

Objectives: People with childhood-onset disabilities are living into adulthood, and the prevalence of smoking and illicit drug use among adults with disabilities is high. We evaluated the relationship between disability status and age of disability onset, current cigarette smoking status, and heavy alcohol drinking.

Methods: We conducted a secondary data analysis of the National Health Interview Survey (NHIS), a US survey on illness and disability.

Using Electronic Health Records to Identify Asthma-Related Acute Care Encounters.

Objective: Leveraging "big data" to improve care requires that clinical concepts be operationalized using available data. Electronic health record (EHR) data can be used to evaluate asthma care, but relying solely on diagnosis codes may misclassify asthma-related encounters. We created streamlined, feasible and transparent prototype algorithms for EHR data to classify emergency department (ED) encounters and hospitalizations as "asthma-related.

The Gap Between What Parents Need and How Pediatric Primary Care Providers Can Help Families of Children With Special Education Needs.

We describe the gap between parents' special education needs and pediatric primary care providers' (PCPs) ability to address those needs from a mixed-methods study at a safety-net hospital. We conducted qualitative interviews with English- and Spanish-speaking parents (n = 25) and PCPs (n = 11) about special education knowledge and experience and interactions with a primary care-embedded special education clinic. PCPs also answered survey questions on these topics.

Conceptualizations of health, ability to act upon those definitions and desire for supports among families from historically marginalized communities.

Respect for parents' values and clinician-parent collaboration is less common among families from historically marginalized communities. We investigated how parents from marginalized communities operationalize health and their preferences for paediatric primary care. We recruited families who spoke English, Haitian Creole or Spanish with at least one child younger than 6 years old.

Disability doesn't discriminate: health inequities at the intersection of race and disability.

Objectives: Given the prevalence of discrimination experienced by racial and ethnic minorities living with disabilities, it is likely that racism experienced by Black, Indigenous, and people of color (BIPOC) is compounded by the ableism experienced by people with disabilities, widening disparities in health and healthcare outcomes. To address this, we described unmet healthcare needs of a sample of Black, non-Hispanic, and Hispanic adults with and without disabilities. The following research question was examined exploratively: Are Black and Hispanic adults with disabilities at increased risk of unmet healthcare needs compared to Black and Hispanic adults without disabilities according to the 2018 National Health Interview Survey?

Methods: Survey data was examined from the 2018 National Health Interview Survey (NHIS), a nationally representative survey of community-dwelling adults in the United States.

Effect of Family Navigation on Participation in Part C Early Intervention.

Objective: Part C Early Intervention (EI) services have been shown to reduce autism symptoms and promote healthy development among young children. However, EI participation remains low, particularly among children from structurally marginalized communities. We investigated whether family navigation (FN) improved EI initiation following positive primary care screening for autism compared to conventional care management (CCM).

Prevalence and sociodemographic characteristics of US community-dwelling older adults with communication disabilities, using the national health and aging trends survey.

Introduction: Identifying the population-level prevalence of a disability group is a prerequisite to monitoring their inclusion in society. The prevalence and sociodemographic characteristics of older adults with communication disabilities (CDs) are not well established in the literature. In this study we sought to describe the prevalence and sociodemographic characteristics of community-dwelling older adults experiencing difficulties with understanding others or being understand when communicating in their usual language.

Beyond Housing for Health: Using Flexible Funds to Improve Maternal and Child Health.

Upstreaming Housing for Health (UHfH) was a pilot program that aimed to improve housing stability and reduce health inequities among people experiencing high-risk pregnancies and their infants. It served 50 families from 2019 to 2020. One critical component of UHfH was an innovative flexible fund, which was originally designed to address housing stability (e.

Access to Speech and Language Services and Service Providers for Children With Speech and Language Disorders.

Objectives: The purposes of this study were to (a) examine children's access to services for their speech and language disorders during their lifetimes; (b) identify any child, disorder, and family characteristics associated with access to services; and (c) describe the speech and language service providers among children who received care.

Study Design: Data from the 2012 National Health Interview Survey were used for this retrospective cohort study. Our sample included 491 children (ages 3;0-17;11 [years;months]) with speech disorders and 333 children with language disorders.

Informal preparation and years of experience: Key correlates of dyslexia knowledge among Massachusetts early elementary teachers.

Background: Dyslexia is a neurobiological condition affecting phonological processing and characterized by reading and phonological awareness difficulties. We assessed correlations between dyslexia knowledge and five independent variables among early elementary teachers in Massachusetts.

Methods: We designed a survey based on two published assessment tools and surveyed 92 early elementary teachers.

Receipt of treatment among a nationally representative sample of US adults with communication disorders.

Introduction: A robust body of literature exists on clinical research outcomes for persons with communication disorders (CD). Comparatively few studies have examined population-based health service outcomes for CD-related services, which capture persons with CDs who may not be part of clinical or administrative data. This is important to describe access to treatment and the factors impacting access.

Parent stress and coping trajectories in Hispanic and non-Hispanic families of children at risk of autism spectrum disorder.

Little is known about parent experiences throughout the diagnostic process for autism or how these parent experiences may help explain the disparities that exist between Hispanic and non-Hispanic families in time-to-diagnosis among children identified as at risk for autism. The current study examined trajectories of parenting stress, coping, and perceived family impact over time, throughout the autism diagnostic process among Hispanic and non-Hispanic families. Hispanic families reported lower levels of parenting stress, coping, and negative family impact across time.

Prevalence of Behavioral Health Problems Among Adults With and Without Communication Disabilities.

Background: Adults with communication disabilities (CDs) experience poor health and health care outcomes. Few studies have examined behavioral health outcomes among this population. We compare the behavioral health of adults with CDs to their peers without such disabilities.

Unmet Needs for Care and Medications, Cost as a Reason for Unmet Needs, and Unmet Needs as a Big Problem, due to Health-Care Provider (Dis)Continuity.

Objective: Provider discontinuity is associated with poorer health-care outcomes compared to continuity in studies using retrospective reports of provider (dis)continuity. This study examined unmet needs for care and assessed cost as the reason for and the level of the problem resulting from unmet needs by provider (dis)continuity using longitudinal data.

Methods: Pooled data on 10 714 working-age adults (aged 18-64) from the Medical Expenditure Panel Survey (panels 16 [2011-2012] and 17 [2012-2013]) were analyzed.

Provider continuity and reasons for not having a provider among persons with and without disabilities.

Background: Persons with disabilities experience health disparities while having usual providers more frequently than persons without disabilities. Provider discontinuity may help to explain these paradoxical findings, but research on the topic is nascent.

Objective: To provide initial insight into whether persons with disabilities more frequently experience provider discontinuity than persons without disabilities.

Adults with Communication Disabilities Experience Poorer Health and Healthcare Outcomes Compared to Persons Without Communication Disabilities.

Background: Persons with speech, language, and/or voice disabilities (collectively referred to as communication disabilities (CD)) represent 10% of the US population, yet their healthcare outcomes have not been described. Generally, research shows that persons with disabilities have poorer health and healthcare outcomes than their non-disabled peers.

Objectives: To examine the health and healthcare outcomes of persons with CD compared to persons without CD.

The relationship between employment and health and health care among working-age adults with and without disabilities in the United States.

To better understand the relationship between employment and health and health care for people with disabilities in the United States (US). We pooled US Medical Expenditure Panel Survey (2004-2010) data to examine health status, and access to health care among working-age adults, comparing people with physical disabilities or multiple disabilities to people without disabilities, based on their employment status. Logistic regression and least squares regression were conducted, controlling for sociodemographics, health insurance (when not the outcome), multiple chronic conditions, and need for assistance.

Two-Year Stability and Change in Access to and Reasons for Lacking a Usual Source of Care Among Working-Age US Adults.

Objective: The objective of this study was to investigate usual source of care (USC) over time.

Methods: A nationally representative sample of working-age adults in the Medical Expenditure Panel Survey (Panels 16 [2011-2012] and 17 [2012-2013]) was divided into 3 groups based on USC questions asked during 2 waves: (1) those having a USC during both waves (always USC), (2) those not having a USC during either wave (never USC), and (3) those who gained or lost a USC between the 2 waves (changed USC). The study examined the sociodemographic and health characteristics associated with these groups and the main reasons for not having a USC among those who never had a USC and those who changed their USC.

Hearing loss and associated medical conditions among individuals 65 years and older.

Background: Hearing loss is prevalent, but few studies have investigated its associations with common medical conditions.

Objective: The objective was to assess the prevalence of medical conditions among individuals with hearing loss, compared to those without hearing loss, in people aged 65 years and older.

Methods: The National Health Interview Survey (NHIS) collects data on a variety of health-related topics, including disability.

Prevalence and reasons for delaying and foregoing necessary care by the presence and type of disability among working-age adults.

Background: While it is commonly accepted that disparities in unmet need for care vary by age, race/ethnicity, income, education, and access to care, literature documenting unmet needs experienced by adults with different types of disabilities is developing.

Objective: The main objective was to determine whether subgroups of people with disabilities are more likely than people without disabilities to delay/forgo necessary care, in general and among the insured.

Methods: We used pooled Medical Expenditure Panel Survey data (2004-2010) to examine delaying or forgoing medical, dental, and pharmacy care among five disability subgroups (physical, cognitive, visual, hearing, multiple) and the non-disabled population.

Asthma and asthma-related health care utilization among people without disabilities and people with physical disabilities.

Background: Previous research has shown that people with disabilities have higher rates of some chronic diseases and receive poorer disease-specific care than their counterparts without disabilities. Yet, little is known about the relationship between asthma and disability.

Objective: This study examines whether differences in the prevalence of asthma, asthma flare, and asthma-related measures of health care quality, utilization and cost exist among people with physical limitations (PL) and without any limitations.