Unrealized Cross-System Opportunities to Improve Employment and Employment-Related Services Among Autistic Individuals.

Policy Points Employment is a key social determinant of health and well-being for the estimated 5.4 million autistic adults in the United States-just as it is for citizens without disabilities. Evaluation and monitoring of publicly funded employment services is paramount given the dramatic increases in adults with autism who need job supports. Vocational Rehabilitation agencies appeared to be absorbing short-term employment needs of autistic people, but Medicaid was severely lacking-and losing ground-in serving those who need longer-term employment services. Across both Vocational Rehabilitation and Medicaid, we estimated that only 1.1% of working-age autistic adults who potentially need employment services are actually receiving them-leaving an estimated 1.98 million autistic individuals without the employment services that are associated with achievement of well-being. CONTEXT: Employment is a key social determinant of health. As such, high rates of unemployment, underemployment, and poverty across the rapidly growing autistic population are concerning. A web of publicly funded services exists to support the employment, and associated health and well-being, of United States citizens with autism and other intellectual and developmental disabilities, namely through Vocational Rehabilitation (VR) and Medicaid home- and community-based services (HCBS) waivers. Given an absence of overarching surveillance of employment services, this study aimed to characterize the distribution of autistic service users across Medicaid versus VR, understand the types of employment services utilized within these programs and expenditures, and assess overall capacity to provide employment services as needs continue to increase. METHODS: This study examined the distribution of employment services among autistic people compared with those with intellectual disability using 2008-2016 data from the Centers for Medicare & Medicaid Services and the Rehabilitation Services Administration. Estimated need for employment services among autistic individuals was compared with capacity derived from VR service counts and a review of HCBS waivers. FINDINGS: The number of autistic people served through VR tripled during the study years, whereas those served through Medicaid only increased slightly. VR spending increased by 384% over the study years, whereas Medicaid costs decreased by 29%. Across VR and Medicaid, we estimated that only 1.1% of working-age autistic adults who needed employment services received them. CONCLUSIONS: Although VR appeared to be absorbing short-term employment needs of autistic individuals, Medicaid was severely lacking-and losing ground-in serving those who needed longer-term employment services. VR far outpaced Medicaid in both the number of autistic people served and total expenditures across the study years. However, an estimated 1.98 million autistic adults did not receive employment services that could be critical to improving their health and well-being.

Association Between Medicaid Waivers and Medicaid Disenrollment Among Autistic Adolescents During the Transition to Adulthood.

This cohort study examines whether Medicaid waivers were associated with a reduced risk of Medicaid disenrollment among autistic adolescents who are transitioning to adulthood.

Feeling intimidated and uncomfortable: Established and exacerbated educational inequities experienced by black parents of autistic children.

There are clear racial disparities that impact the education system. To capture the educational experiences of family members of Black autistic children as compared to white autistic children in the United States (US), a mixed methods design was implemented and included semi-structured interviews with family members of children between the ages of 5-12 who participated in a survey. The survey responses were used as attribute data. Twenty-nine interviews were conducted with parents of school-age autistic children. Findings from this study highlight challenges experienced by parents including education service use and engagement during the COVID-19 pandemic, engaging with school personnel, and securing accommodations. The findings from this study illuminate the disparities experienced by Black parents of autistic children directly reported by the parents themselves in comparison to white parents. The themes elucidated in this study have implications for policy, practice, and research to ensure equity in educational settings for Black autistic students and their families.

Living arrangements and satisfaction of current arrangement among autistic adults reported by autistic individuals or their caregivers.

BACKGROUND: Living arrangements is an essential component of the social environments for autistic adults. The need to understanding the status and experience of living arrangements has been highlighted. AIM: This study examined living arrangements and satisfaction with current arrangements of autistic adults reported by autistic adults or caregivers of autistic adults. METHODS: This study used data from a statewide survey of autistic adults or caregivers. RESULTS: Older autistic adults and those employed and had higher financial resources were more likely to live alone or with a roommate or spouse than to live with family or in a supervised setting. Correlates of greater satisfaction included being young, either men or women (vs. non-binary adults), public insurance, fewer service needs, no or one mental health diagnosis (vs. two or more), no psychiatric emergency room or hospitalisation history, and living with a roommate or spouse (vs. living with family). CONCLUSION: This cross-sectional study adds to the literature on the status of living arrangements and satisfaction with living arrangements among autistic adults. Future research is needed to investigate contributing factors to the satisfaction of living arrangements and quality of life among autistic adults.

Self-reported COVID-19 vaccination acceptance and hesitancy among autistic adults.

Identifying factors associated with COVID-19 vaccination acceptance among vulnerable groups, including autistic individuals, can increase vaccination rates and support public health. The purpose of this study was to determine differences among autistic adults who reported COVID-19 vaccination acceptance from those who did not. In this study we describe COVID-19 vaccination status and self-reported preferences among autistic adults and identify related factors. Vaccine accepters were more likely to report increased loneliness during COVID-19, lived in more populous counties (p = 0.02), and lived in counties won by President Biden in the 2020 US presidential election (p < 0.001). Positive correlations were found between desire to protect others, concern about contracting COVID-19, and trusting vaccine safety (p < 0.001). Concern about vaccine safety was common among the vaccine hesitant, while lack of concern about COVID-19 overall was not. Identifying health promotion strategies based on self-reported, lived experiences about COVID-19 among vulnerable groups is key for public health impact.

Brain barriers virtual: an interim solution or future opportunity?

BACKGROUND: Scientific conferences are vital communication events for scientists in academia, industry, and government agencies. In the brain barriers research field, several international conferences exist that allow researchers to present data, share knowledge, and discuss novel ideas and concepts. These meetings are critical platforms for researchers to connect and exchange breakthrough findings on a regular basis. Due to the worldwide COVID-19 pandemic, all in-person meetings were canceled in 2020. In response, we launched the Brain Barriers Virtual 2020 (BBV2020) seminar series, the first stand-in virtual event for the brain barriers field, to offer scientists a virtual platform to present their work. Here we report the aggregate attendance information on two in-person meetings compared with BBV2020 and comment on the utility of the virtual platform. METHODS: The BBV2020 seminar series was hosted on a Zoom webinar platform and was free of cost for participants. Using registration- and Zoom-based data from the BBV2020 virtual seminar series and survey data collected from BBV2020 participants, we analyzed attendance trends, global reach, participation based on career stage, and engagement of BBV2020. We compared these data with those from two previous in-person conferences, a BBB meeting held in 2018 and CVB 2019. RESULTS: We found that BBV2020 seminar participation steadily decreased over the course of the series. In contrast, live participation was consistently above 100 attendees and recording views were above 200 views per seminar. We also found that participants valued BBV2020 as a supplement during the COVID-19 pandemic in 2020. Based on one post-BBV2020 survey, the majority of participants indicated that they would prefer in-person meetings but would welcome a virtual component to future in-person meetings. Compared to in-person meetings, BBV2020 enabled participation from a broad range of career stages and was attended by scientists in academic, industry, and government agencies from a wide range of countries worldwide. CONCLUSIONS: Our findings suggest that a virtual event such as the BBV2020 seminar series provides easy access to science for researchers across all career stages around the globe. However, we recognize that limitations exist. Regardless, such a virtual event could be a valuable tool for the brain barriers community to reach and engage scientists worldwide to further grow the brain barriers research field in the future.

Living arrangements and community participation among autistic adults: Exploring the possible influences of living alone or with others.

BACKGROUND: With the increasing prevalence of autistic individuals, it is greatly needed to examine the factors impacting their community participation experiences. Where autistic adults live and how that may be related to their participation and quality of life is one environmental factor that has received little attention. AIMS: This study explored the association between living arrangements in the community and community participation for autistic adults. METHOD: This study used data from a statewide survey of autistic adults (N = 744) to investigate the relationship between living arrangements (live alone with or without support, live with roommate/spouse, or live with family) and the amount, breadth, and sufficiency of community participation. RESULTS: After controlling for sociodemographic and clinical factors known to be associated with community participation, autistic adults living with family members participated less frequently in community activities over 30 days than those living with a roommate/spouse. However, they experienced similar levels of sufficiency with their participation. Autistic adults living alone with support reported the lowest levels of sufficiency with their participation, although the amount and breadth of their participation were no different from other adults. CONCLUSION: These findings have several implications for providing support to enable autistic adults to participate in the areas that are important to them and to the extent they desire. Future research is needed to gain a better understanding of how interests and expectations for participation may be influenced by living situations.

States' use of Medicaid to meet the needs of autistic individuals.

OBJECTIVE: To assess the use of Medicaid programs, including waivers, to address the needs of aging autistic individuals. DATA SOURCES: We gathered data on Medicaid programs in place between 2004 and 2015 for 50 states and the District of Columbia from the Centers for Medicare and Medicaid Services website, by contacting state Medicaid administrators and advocacy groups, and by reviewing the Medicaid Analytic eXtract Waiver Crosswalk. STUDY DESIGN: This retrospective analysis classified each Medicaid program and documented state changes over time in eligibility criteria: those serving autism spectrum disorder only, autism spectrum disorder or intellectual disability, and intellectual disability only. DATA COLLECTION/EXTRACTION METHODS: We captured age and diagnosis eligibility criteria for Medicaid programs serving any of the three target groups. PRINCIPAL FINDINGS: A total of 269 Medicaid programs met our criteria and most programs (51%) were 1915(c) waivers. The number of autism-specific 1915(c) waivers grew more than fivefold during the study period, outpacing increases in waivers serving individuals with intellectual disability. CONCLUSIONS: States varied in their use of Medicaid to address the needs of the aging autism population. Further study of characteristics of states that changed their Medicaid programs, and of the health care use and outcomes associated with these changes, are needed to identify opportunities to replicate effective approaches to meeting the needs of this population.

Characterizing and Validating Stripe Rust Resistance Loci in US Pacific Northwest Winter Wheat Accessions (Triticum aestivum L.) by Genome-wide Association and Linkage Mapping.

Stripe rust resistance is a critical need for wheat cultivars in the US Pacific Northwest (PNW). Our previous genome-wide association study (GWAS) for stripe rust resistance in a set of PNW winter wheat accessions (Panel-2) identified multiple marker-trait associations (MTAs) for both all-stage and field resistance. In this study, we conducted additional GWAS using a different set of PNW winter wheat accessions (Panel-1) that contained recently bred soft white winter wheat breeding lines and cultivars. A total of 12 all-stage resistance MTAs and eight field resistance MTAs were identified. Within these MTAs, nine MTAs for all-stage resistance and two MTAs for field resistance were located distinctly from previously characterized genes and likely represent novel loci. Markers IWB60567 (1B), IWB24342 (2A), and IWB46564 (2B) explained the largest phenotypic variances for disease responses. The analysis confirmed that MTAs on chromosome 1B were indeed the same as identified in Panel-2 and that MTAs on chromosome 2A were likely and closely linked to another field resistance QTL, (Panel-2). Haplotypes for MTAs on chromosome 1B, , and linked loci on chromosome 2A provide useful information for marker development and introgression of these QTL into wheat breeding programs.

Program experiences of adults with autism, their families, and providers: Findings from a focus group study.

A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.