Objective: Understanding families' experiences from their initial developmental concerns through the first several months after autism spectrum disorder (ASD) diagnosis might help explain persistent disparities in age of diagnosis for low-income Latino children and those whose parents speak a primary language other than English. We explored these experiences among Latino parents of children recently diagnosed with ASD to develop a richer understanding of this critical juncture. Method: We conducted semistructured interviews with Latino parents of children diagnosed with ASD in the previous 3 months who were receiving follow-up care through a large, hospitalbased outpatient practice. Interviews were recorded, transcribed verbatim, translated, and analyzed using an iterative process. Results: Twenty parents participated in a semistructured interview approximately 3 months after their child was diagnosed with ASD. All respondents were female and Latina, 90% spoke Spanish, and 95% of children received Medicaid. We identified the following 3 themes from their experiences: (1) When parents first shared their concerns about their child's development with professionals, they felt unheard. (2) Parents were surprised that the diagnostic process for ASD relied on parental description of child development and behavior and observation of the child, not on medical tests. (3) Receiving an ASD diagnosis was a life-altering event for parents, and how that diagnosis was communicated by clinicians had a significant impact on families. Conclusion: Parents of young Latino children identified several barriers throughout the process of ASD identification and diagnosis that have important implications for improving clinician communication with families.
Research Objective Persons with intellectual and developmental disabilities (IDD) have complex medical needs and experience gaps in care due to their unique needs, and challenges faced by health professionals in responding to them. We characterize New Jersey Medicaid‐enrolled individuals with IDD and examine racial and ethnic (RE) disparities in ambulatory care (AC) quality and the extent to which RE gaps are explained by patient and health system factors. We focus on the potential positive effect of home and community‐based services (HCBS) provided through Medicaid waiver programs in mitigating disparities and improving care. Study Design Utilizing New Jersey Medicaid comprehensive claims data over 2011‐2017, quality of AC was assessed using AC sensitive preventable hospitalizations (PH), IDD‐specific PH (IDDPH), and ED visits. Additional metrics including rates of preventive care visits (cancer screening, vaccination) and quality of behavioral health (BH) care will be available by the time of the conference. Econometric modeling of disparities utilized the Institute of Medicine as well as the Residual Direct Effect approaches that adjust for patient characteristics (sex, age, number of chronic and IDD conditions, presence of BH condition), allowing for mediation of disparities through provider and system‐level factors, for example, average quality of AC in zip code of residence. Difference‐in‐difference estimation examined how availability of HCBS waiver services impacted differences in quality across racial/ethnic groups. Findings from analysis utilizing an area‐level instrumental variable addressing potential selection into waiver services and access to IDD‐specialized providers will be available for the conference. Statistical significance was assessed at P = .05 threshold. Population Studied 37 078 Medicaid‐enrolled individuals of age 22+ over 2011‐2017, who reside: a) in DD intermediate care facilities, or b) in the community and receive HCBS from waiver programs, or c) in the community, do not receive Medicaid‐paid HCBS and diagnosed with one or more of 13 IDD conditions. We examined ambulatory care among 92.7% of this population (n = 34 382) who were always in the community. Principal Findings 44.2% of the community population was female, the mean age was 45.5 years, 59.3% had a BH condition, 25.6% had 3+ chronic conditions, and 49.4% were enrolled in HCBS waivers that provide services such as case management, day habilitation, and assistive technology. Among them, black (OR = 0.55) and Hispanic (OR = 0.21) populations had lower adjusted odds of being enrolled in waivers providing HCBS. Among those not receiving Medicaid‐paid HCBS, blacks had higher odds of PH (OR = 1.50), ED visits (OR = 1.33), and IDDPH (OR = 1.11). Hispanics had higher odds of ED visits (OR = 1.12). However, these disparities did not exist for individuals enrolled in HCBS waiver programs. Conclusions Our analysis sheds light on RE disparities in AC outcomes within the IDD population using established measures of care quality and ident...
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