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. Among 2020 NHIS participants aged 22-80 years (n = 28 225), we compared self-reported prevalence of current cigarette smoking and heavy alcohol drinking among those with and without disabilities and among those with childhood- versus adult-onset disabilities. We used adjusted logistic regression analysis to calculate the adjusted odds ratios (AORs) of current smoking and heavy alcohol drinking based on disability status and age of disability onset. RESULTS: Compared with adults without disabilities, adults with disabilities were significantly more likely to report current smoking (23.5% vs 11.2%; P < .001) and significantly less likely to report heavy alcohol drinking (5.3% vs 7.4%; P = .001). The prevalence of these behaviors did not vary significantly by age of disability onset. In adjusted logistic regression models, adults with disabilities had significantly higher odds of current smoking (AOR = 1.76; 95% CI, 1.53-2.03) and similar odds of heavy alcohol drinking (AOR = 0.82; 95% CI, 0.65-1.04) compared with adults without disabilities. The odds of these health behaviors did not vary significantly by age of disability onset. CONCLUSIONS: Adults with disabilities overall may be at high risk for these unhealthy behaviors, particularly smoking, regardless of age of disability onset. Routine screening and cessation counseling related to smoking and unhealthy alcohol use are important for all people with disabilities.

Using electronic health records to identify asthma-related acute care encounters.

BACKGROUND: 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. OBJECTIVE: We created streamlined, feasible and transparent prototype algorithms for EHR data to classify emergency department (ED) encounters and hospitalizations as "asthma-related." METHODS: As part of an asthma program evaluation, expert clinicians conducted a multi-phase iterative chart review to evaluate 467 pediatric ED encounters and 136 hospitalizations from calendar years 2017 and 2019, rating the likelihood that each encounter was asthma-related. Using this as a reference standard, we developed rule-based algorithms for EHR data to classify visits. Accuracy was evaluated using sensitivity, specificity, and positive and negative predictive values (PPV, NPV). RESULTS: Clinicians categorized 38% of ED encounters as "definitely" or "probably" asthma-related; 13% as "possibly" asthma-related; and 49% as "probably not" or "definitely not" related to asthma. Based on this reference standard, we created two rule-based algorithms to identify "definitely" or "probably" asthma-related encounters, one using text and non-text EHR fields and another using non-text fields only. Sensitivity, specificity, PPV, and NPV were >95% for the algorithm using text and non-text fields and >87% for the algorithm using only non-text fields compared to the reference standard. We created a two-rule algorithm to identify asthma-related hospitalizations using only non-text fields. CONCLUSIONS: Diagnostic codes alone are insufficient to identify asthma-related visits, but EHR-based prototype algorithms that include additional methods of identification can predict clinician-identified visits with sufficient accuracy.

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. Parents reported four challenges: (1) knowing where to start and how to advocate for their youth, (2) being heard or having a say, (3) using the "right" language, and (4) gathering information on special education resources. Primary care providers disclosed three barriers: (1) training, (2) knowledge to assess the appropriateness of supports, and (3) time to address concerns. The gap between PCPs and parents was bridged by the special education clinic. Systematic interventions can ensure that PCPs help parents address the special education needs of their patients.

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. Staff queried families' values and life experiences, perspectives on health and healthcare, social supports and resources. Fourteen interviews with the parents of 26 children were thematically analysed. Interviews revealed the following four themes: (1) parents' definitions of 'health' extend beyond physical health; (2) families' ability to actuate health definitions is complicated by poverty's impact on agency; (3) parents engage in ongoing problem recognition and identify solutions, but enacting solutions can be derailed by barriers and (4) parents want support from professionals and peers who acknowledged the hard work of parenting. Eliciting parents' multidimensional conceptualizations of health can support families' goal achievement and concern identification in the context of isolation, limited agency and few resources. Efforts to improve family centred care and reduce disparities in paediatric primary care must be responsive to the strengths, challenges, resources and priorities of marginalized families.

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). METHODS: We conducted a randomized clinical trial among 339 families of children (ages 15-27 months) who screened as having an increased likelihood for autism at 11 urban primary care sites in 3 cities. Families were randomized to FN or CCM. Families in the FN arm received community-based outreach from a navigator trained to support families to overcome structural barriers to autism evaluation and services. EI service records were obtained from state or local agencies. The primary outcome of this study, EI service participation, was measured as the number of days from randomization to the first EI appointment. RESULTS: EI service records were available for 271 children; 156 (57.6%) children were not engaged with EI at study enrollment. Children were followed for 100 days after diagnostic ascertainment or until age 3, when Part C EI eligibility ends; 65 (89%, 21 censored) children in the FN arm and 50 (79%, 13 censored) children in the CCM arm were newly engaged in EI. In Cox proportional hazards regression, families receiving FN were approximately 54% more likely to engage EI than those receiving CCM (1.54 (95% confidence interval: 1.09-2.19), P = .02). CONCLUSIONS: FN improved the likelihood of EI participation among urban families from marginalized communities.

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. METHODS: We conducted a cross-sectional analysis of the National Health and Aging Trends Survey (2015), a nationally representative survey of Medicare beneficiaries ages ≥ 65 years old (N = 7,029). We calculated survey weight-adjusted prevalence estimates by mutually exclusive subgroups of no, hearing only, expressive-only, cognitive only, multiple CDs, and an aggregate any-CD prevalence. We described race/ethnicity, age, gender, education, marital status, social network size, federal poverty status, and supplemental insurance for all groups. Pearson's chi-squared statistic was used to compare sociodemographic characteristics between the any-CD and no-CD groups. RESULTS: An estimated 25.3% (10.7 million) of community-dwelling older adults in the US experienced any-CDs in 2015; approximately 19.9% (8.4 million) experienced only one CD while 5.6% (2.4 million) had multiple. Older adults with CDs were more likely to be of Black race or Hispanic ethnicity as compared to older adults without CDs (Black 10.1 vs. 7.6%; Hispanic: 12.5 vs. 5.4%; P < 0.001). They also had lower educational attainment (Less than high school: 31.0 vs 12.4%; P < 0.001), lower poverty levels (<100% Federal poverty level: 23.5% vs. 11.1%; P < 0.001) and less social supports (Married: 51.3 vs. 61.0%; P < 0.001; Social network ≤ 1 person: 45.3 vs 36.0%; P < 0.001). CONCLUSIONS: The proportion of the older adult population experiencing any-CDs is large and disproportionately represented by underserved sociodemographic groups. These findings support greater inclusion of any-CDs into population-level efforts like national surveys, public health goals, health services, and community research aimed at understanding and addressing the access needs of older adults who have disabilities in communication.

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.g., rent arrears) but expanded its scope to address material needs that promoted family stability within the context of their housing situation (e.g., housing safety or maternal-infant health while in shelter). Seventy-six percent of families accessed flexible funds for items such as rental assistance, cribs, and breast pumps, with average financial support of $1343 (standard deviation = $625). The flexible fund is an example of a cash transfer policy. Such policies have shown to positively impact family health and well-being in the USA and internationally. Similar funding should be considered as part of future programming to reduce housing instability and homelessness.

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. We measured the receipt of services for speech or language difficulties (main outcome) and the type of professional providing services (secondary outcome). We examined associations between services and child, disorder, and family characteristics. RESULTS: Approximately 75% of children with speech and language disorders had ever received services for their difficulties. Privately insured children and children with co-occurring conditions were more likely to receive services than their peers who were uninsured (speech: 6.1 [1.7,21.3]; language: 6.6 [1.3,32.9]) and had no co-occurring conditions (speech: 2.1 [1.2,3.9]; language: 2.9 [1.5,5.5]). Speech-language pathologists (SLPs) were the most commonly reported provider of services (speech: 68%, language: 60%) followed by early interventionists. CONCLUSIONS: Most children with speech and language disorders received services. However, disparities existed by race/ethnicity, health insurance type, co-occurring diagnoses, and disorder duration (speech only). Most children who received services were being provided with care by the experts of speech and language: SLPs. Updated population-based data and implementation studies are needed to document speech and language screening, referral, and access to services. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.19799389.

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. We address this gap, describing four CD-related healthcare outcomes among adults reporting problems with communication (voice, speech, and language): (1) utilization, (2) utilization determinants, (3) professionals providing CD care, and (4) patient-reported service-related outcomes. METHODS: We conducted a retrospective, cross-sectional study of community-dwelling adults (≥18 years) in the US self-reporting CD on the nationally representative 2012 National Health Interview Survey. Separate analyses examined adults with voice (n = 1,323), speech (n = 658), and language (n = 396) disorders. We used survey weighted logistic regression to assess the likelihood of treatment, controlling for health, disorder, and sociodemographic characteristics; Pearson's chi square was calculated for other outcomes. RESULTS: An estimated 10% of adults reporting CD described receiving care addressing their CD. Employment, sociodemographic and economic status, health insurance, level of severity, and presence of co-occurring CD were associated with receiving treatment. Over half of respondents with speech and language disorders and less than a fifth of respondents with voice disorders reported receiving care from speech-language pathologists. Adults who received CD-related services reported improvements in activities (52-69% overall) and CD (33-48% overall). CONCLUSIONS: This population-based study shows that general access to CD services is low. Underserved populations have less access to treatment than their counterparts with more resources. Improving access to CD services requires creative interventions addressing patient and provider needs, as well as healthcare system design. Population-based follow-up studies are necessary to track progress toward improving access to care.

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. METHODS: Retrospective cohort study examining the 2012 National Health Interview Survey Voice, Speech, and Language Supplement. We compared adults (> 17 years old) with voice only (n = 2169), speech/language (SL) only (n = 730), and speech/language and voice (SLV; n = 450) disabilities to adults without CDs (n = 29,873). Outcomes include behavioral health diagnoses (eg, depression), substance misuse (eg, excessive alcohol or tobacco use), experiences (eg, nonspecific psychological distress), and health care utilization. Unadjusted Pearson's χ2 and adjusted logistic regression analyses controlling for sociodemographic, health, and other disability measures were conducted. RESULTS: Adults with CDs more frequently reported diagnoses (7.1% to 35.9% vs 1.8% to 8.6%), substance misuse (SL only: 15.5% vs 5.5%), and nonspecific psychological distress (SL only: 14.7%; SLV: 22.3% vs 2.3%) compared with adults without CDs (all P < .001). These findings were consistent for all outcomes and in multivariate analyses. Odds ratios ranged from 1.4 (99.7% CI, 1.1-1.7) to 5.0 (99.7% CI, 3.6-6.8). Adults with CDs more frequently endorsed visiting mental health professionals compared with adults without CDs (voice only: 11.4%; SL only: 19.1%; SLV: 23.1%; vs 6.8%, all P < .001), but these differences became nonsignificant in multivariate analyses. CONCLUSIONS: Adults with CDs experience poorer behavioral health and health care outcomes compared with persons without CDs. Barriers to identification and treatment related to CDs must be addressed for persons with CDs.

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. METHODS: Pooled 2-year data from panels 14-16 (2009-2012) of the Medical Expenditure Panel Survey were examined. Working-age adults (18-64) were categorized as having no disability, basic disabilities, or complex disabilities. Persons were categorized having provider continuity (provider throughout the period) or discontinuity (gaining or losing providers during the period). χ2 and multinomial logistic regressions were used to examine outcomes by disability status. RESULTS: Persons with complex disabilities more frequently experienced continuity (83.7%) than persons without disabilities and those with basic disabilities (60.7% and 65.6%, respectively, p < 0.001). Seldom or never being sick was the most frequently reported reason for not having a usual provider; more persons without disabilities (64%) reported this reason than persons with disabilities (basic: 41.9%, p < 0.001; complex: 26.6%, p = 0.001). Persons with disabilities more frequently reported visiting different providers for different needs and not having a usual provider due to the costs of medical care than persons without disabilities. CONCLUSIONS: Future research needs to examine the influence of continuity on healthcare disparities among persons with complex disabilities. Policies and practice must be attentive to how proposed changes to the healthcare system potentially reduce access to care among persons with 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 (dis)continuity was defined by 2 reports of having a health-care provider during the period. RESULTS: Persons who lost providers were more likely to forego medical care and prescription medications, forego care due to cost, and report that delaying care was a big problem than their peers who experienced continuity. Persons who gained providers were more likely to delay dental care than those who always had, lost, or never had providers. CONCLUSIONS: Persons who experience discontinuity have poorer access to care than their peers who experience continuity. Public health initiatives should promote longitudinal relationships between persons and health-care providers.

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. DESIGN: Retrospective cohort study of the 2012 National Health Interview Survey, which contained the first supplemental questions on CD. We compared proportional differences in outcomes; logistic and ordered logistic regression assessed the outcome measures across CD categories, controlling for demographics, non-communication disabilities, and chronic conditions. Findings are weighted to permit national inferences. PARTICIPANTS: Adults (≥ 18 years old) were divided into 4 mutually exclusive groups: people with voice disabilities only; speech/language disabilities only; speech/language and voice disabilities; and people without CD. MAIN MEASURES: Chronic health conditions; self-rated health; access to care; unmet needs for care; healthcare utilization. KEY RESULTS: Adults with CD more frequently had ≥ 1 chronic condition (voice 67.9%, speech/language 68.6%, speech/language and voice 79.9%, no CD 50.1%, p < 0.001) and reported fair/poor health (voice 19.5%, speech/language 32.5%, speech/language and voice 48.3%, no CD 11.2%, p < 0.001) compared to those without CD. Adults with CD more frequently utilized healthcare compared to those without CD. However, persons with CD endorsed greater difficulties accessing care than those without CD, including identifying a usual source of care, trouble finding a physician, and delaying or foregoing care (e.g., delayed due to availability of care: voice 26.1%, speech/language 37.2%, speech/language and voice 30.8% no CD 16.1%, p < 0.001). CONCLUSIONS: Persons with CD are medically complex and experience greater challenges accessing healthcare than persons without CD. Healthcare providers need support and tools to provide equitable care that addresses the medical needs of persons with CD.

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. Three years of NHIS data (2011-2013; unweighted n = 53,111) were pooled to examine subpopulations of individuals with hearing loss. Comparisons were made between adults aged 65 and older with, and without, self-reported hearing loss. Statistical analysis included descriptive frequencies, Chi-square tests, and multiple logistic regressions. The outcomes of interest included self-reported diagnosis of arthritis, cardiovascular disease, diabetes, high blood pressure, emphysema, stroke, cancer, asthma, multiple chronic conditions, health status, and obesity. RESULTS: Hearing loss prevalence was nearly 37%. After adjusting for sociodemographics, smoking status, and disability, hearing loss was independently associated with the following conditions: arthritis (OR 1.41; 1.27-1.57), cancer (OR 1.35; 1.21-1.5), cardiovascular disease (OR 1.48; 1.33-1.66), diabetes (OR 1.16; 1.03-1.31), emphysema (OR 1.41; 1.14-1.74), high blood pressure (OR 1.29; 1.17-1.43), and stroke (OR 1.39; 1.12-1.66). There was an association with worse health status over the past year (OR 1.5 (1.3-1.73). CONCLUSIONS: Hearing loss among older individuals is independently associated with increased disease burden and poorer self-reported health. Future studies are needed to investigate the mechanistic nature of these associations, and whether improved access to hearing healthcare surveillance can reduce the overall health burden among these individuals.

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. RESULTS: Of the 10 792 adults in the analysis, a longitudinally weighted 18.8% reported that their USC changed during the period. Among adults in the changed USC group, those with private (odds ratio [OR] = 2.0, P = .001) or public (OR = 2.2, P = .001) health insurance and 1 (OR = 1.7, P = .04) or ≥2 (OR = 3.1, P = .02) chronic health conditions were more likely to transition to having a USC from not having a USC, compared with those who had no insurance and no chronic conditions. Compared with those in the changed USC group, those in the never USC group were more likely to report preferring not to have a USC (57.9% vs 80.1%, P < .001). CONCLUSIONS: Insurance and public health policies and programs are needed to reduce short-term changes in USC and increase the number of adults with ongoing, consistent USC.

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. METHODS: Data from the 2004-2010 Medical Expenditure Panel Survey were pooled to compare outcomes for working-age adults (18-64) with PL to those with no limitations. RESULTS: People with PL had higher rates of asthma (13.8% vs. 5.9%, p < 0.001) and recent asthma flare (52.6% vs. 39.6%, p < 0.001) than people without limitations. There were no differences in health care quality, utilization or cost between people with PL and people without limitations in multivariate analyses. CONCLUSIONS: Although there are no differences in asthma-related quality or utilization of health care, people with PL have poorer asthma control than people without limitations. Research is needed to determine what factors (e.g., focus on other acute ailments, perceptions that asthma control cannot improve) are related to this outcome. Future research must also examine differences in asthma severity, and its impact on asthma control and health care-related outcomes, among people with and without disabilities.

National Survey of Providers Treating Patients With Metabolic Disorders Identified by Newborn Screening Demonstrates Challenges Faced by Clinical Care Systems.

OBJECTIVES: To evaluate care processes for infants who are identified by newborn screening (NBS) and diagnosed with metabolic disorders during their first year of life. METHODS: A survey instrument was used to assess the scope and intensity of services needed to provide quality health care for patients from birth to 1 year of age who have a metabolic disorder identified by NBS. Significance testing was not performed; descriptive analyses are reported. RESULTS: Providers spend significant amounts of time on activities that are not direct patient care. The most challenging aspect of their work was the lack of reimbursement for care. CONCLUSION: Provision of genetics services for patients with a metabolic disorder is time and labor intensive, and insurance coverage and reimbursement for these services remain inadequate. Health care payment and/or system reform is necessary to provide optimal care to patients with metabolic disorders identified by NBS.

National profile of children with Down syndrome: disease burden, access to care, and family impact.

OBJECTIVE: To measure the co-morbidities associated with Down syndrome compared with those in other children with special health care needs (CSHCN). Additionally, to examine reported access to care, family impact, and unmet needs for children with Down syndrome compared with other CSHCN. STUDY DESIGN: An analysis was conducted on the nationally representative 2005 to 2006 National Survey of Children with Special Health Care Needs. Bivariate analyses compared children with Down syndrome with all other CSHCN. Multivariate analyses examined the role of demographic, socioeconomic, and medical factors on measures of care receipt and family impact. RESULTS: An estimated 98,000 CSHCN have Down syndrome nationally. Compared with other CSHCN, children with Down syndrome had a greater number of co-morbid conditions, were more likely to have unmet needs, faced greater family impacts, and were less likely to have access to a medical home. These differences become more pronounced for children without insurance and from low socioeconomic status families. CONCLUSIONS: Children with Down syndrome disproportionately face greater disease burden, more negatively pronounced family impacts, and greater unmet needs than other CSHCN. Promoting medical homes at the practice level and use of those services by children with Down syndrome and other CSHCN may help mitigate these family impacts.