Racial and Ethnic Disparities in Community Mental Health Use Among Autistic Adolescents and Young Adults.

PURPOSE: The purpose of this cohort study was to evaluate differences in rate of co-occurring mental health (MH) conditions among transition-age autistic youth (TAYA) who are Black, indigenous, and other people of color, and to identify enabling variables associated with any community MH visit in this population. METHODS: Medicare-Medicaid Linked Enrollees Analytic Data Source 2012 data were used for this study. TAYA 14-29 years old who received fee-for-service Medicare, Medicaid, or both were included. Predisposing, enabling, and need variables associated with both presence of MH conditions and any community MH visit were examined with general linear modeling. RESULTS: N = 122,250 TAYA were included. Black, Asian/Pacific Islander, and Hispanic TAYA were significantly less likely than White TAYA to have a diagnosis of substance-use, depressive, anxiety, attention-deficit hyperactivity disorder, or post-traumatic stress disorders. These groups were also significantly less likely to have had a community MH visit in the past year after controlling for predisposing, enabling, and need variables. Enabling variables associated with greater use of at least one community MH visit included dual enrollment in both Medicare and Medicaid and 12+ months of enrollment in 1115 or 1915(C) Medicaid waivers. DISCUSSION: Service delivery factors are an important area of future research, particularly dual enrollment and coverage disparities for Black, indigenous, and other people of color TAYA. Examining coverage of managed care enrollees, including differences by state, may offer additional insights on how these factors impact care.

Creating the Global Criminal Justice Survey: A Questionnaire Designed to Gather Perspectives from the Autism Community and Criminal Justice Professionals.

Autistic people's perceptions of their interactions with criminal justice professionals are predominantly negative; however, little is known about the state of interactions on a global scale. To further understanding, a comprehensive stakeholder questionnaire was created. Aspects of reliability and validity including evidence for test content and internal structure were gathered using expert reviews, cognitive interviewing, pilot data collection, and a larger data collection effort (N = 1618). Data was gathered from the autism community through perspectives of parents/caregivers as well as from self-reported autistic adults. Criminal justice professionals included law enforcement officers, corrections professionals, probation and parole officers, forensic psychologists and legal professionals. The scale development process was detailed in order to sufficiently document the initial psychometric evidence and share the steps taken to gain diverse stakeholder input. This study is a critical first step in generating further information to facilitate policy and program development with wide applicability.

Family-Centered Interventions for Children on the Autism Spectrum (2013-2021).

Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. The authors completed a systematic review of family- and person-centered planning interventions for families of autistic1 children, or autistic adolescents and adults gathered from literature published between 2013 and 2021. This systematic review brief presents findings from the six included articles that focused on family-centered planning interventions. Emerging evidence from these six studies supports the use of coaching interventions with caregivers of children on the autism spectrum to address both child and parent outcomes. These outcomes include individualized goals; caregiver sense of competence, empowerment, or self-efficacy; occupational performance of children and mothers; and caregiver satisfaction with their child's occupational performance.

Person-Centered Interventions for Autistic Adults Ages 18+ (2013-2021).

Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the Evidence-Based Practice Program of the American Occupational Therapy Association. Each systematic review brief summarizes the evidence for a theme related to a systematic review topic. This systematic review brief presents findings from a systematic review of family- and person-centered planning interventions for autistic1 adults aged 18+ years gathered from literature published between 2013 and 2021.

Person-Centered Interventions for Autistic Adolescents Ages 13-19 Years (2013-2021).

Systematic review briefs provide a summary of findings from systematic reviews developed in conjunction with the Evidence-Based Practice Program of the American Occupational Therapy Association. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from a systematic review of family- and person-centered planning interventions for autistic1 adolescents aged 13-19 yr gathered from literature published between 2013 and 2021.

Interventions for Work/Employment Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on work/employment interventions and participation outcomes for autistic1 adults.

Interventions for Social Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on social participation interventions and participation outcomes for autistic1 adults.

Is medical home care adequacy associated with educational service use in children and youth with autism spectrum disorder (ASD)?

BACKGROUND: The American Academy of Pediatrics (AAP) recommends medical home care for children and youth with autism spectrum disorder (ASD) for health needs. Children and youth with ASD also receive educational services for cognitive, social, and behavioral needs. We measured whether inadequate medical home care was significantly associated with current educational service use, controlling for sociodemographic factors. METHODS: We analyzed the 2016/2017 National Survey of Children's Health (NSCH) on 1,248 children and youth with ASD ages 1-17. Inadequate medical home care was operationalized as negative or missing responses to at least one medical home component. Educational service use was defined as current service use under individualized family service plans (IFSP) and individualized education programs (IEP). RESULTS: Inadequate medical home care was significantly associated with higher likelihood of current educational service use (aOR = 1.95, 95% CI [1.10, 3.44], p = 0.03). After adjustment, older children (aOR = 0.91, 95% CI [0.84, 0.99], p = 0.03), lower maternal health (aOR = 0.52, 95% CI [0.29, 0.94], p = 0.03), and children without other special health care factors (aOR = 0.38, 95% CI [0.17-0.85], p = 0.02) had significantly lower odds of current educational service use. CONCLUSIONS: Inadequate medical home care yielded higher odds of current educational service use. Child's age, maternal health, and lack of other special health care factors were associated with lower odds of current educational service use. Future research should examine medical home care defined in the NSCH and improving educational service use via medical home care.

Community Conversations: Stakeholder-Identified Research Priorities to Foster Community Participation for Individuals With Intellectual and Developmental Disability.

To identify future research priorities and meaningful outcomes focused on community-level interventions for children and youth with intellectual and developmental disabilities and families, a group underrepresented in research, we established a diverse patient-centered outcomes research (PCOR) community. We focused on engaging regionally and nationally-diverse stakeholders-individuals, families, healthcare professionals, community, and policy experts-in research development activities that would build partnerships and research capacity. This community of stakeholders also represented the matrix of systems, services, and programs that people frequent in their communities (e.g., cultural arts, worship, sports and recreation, and transportation). We present the engagement process and methods for including individuals with intellectual and developmental disabilities as stakeholders in research planning and processes. The results of planning, completing, and evaluating three face-to-face research capacity-building meetings and their subsequent stakeholder engagement activities include: (1) individuals with intellectual and developmental disabilities and their families clearly expressed a desire to be included and to feel good about their participation in community settings, (2) many of our stakeholders wanted action and change to happen in their communities now, and often did not realize or understand that research takes time, (3) organizations expressed a need for mentoring related to best practices for access and inclusive programming. Overarching issues around societal inclusion, equal opportunities, and life chances for individuals with intellectual and developmental disabilities and their families were front and center across communities and multi-stakeholder groups, and achieving change remains valued and a high priority.

Occupational Therapy Service Delivery Among Medicaid-Enrolled Children and Adults on the Autism Spectrum and With Other Intellectual Disabilities.

IMPORTANCE: Rates of occupational therapy service utilization among people with autism spectrum disorder (ASD) or intellectual disability (ID) have not been explored in population-based samples. OBJECTIVE: To describe occupational therapy services delivered to Medicaid-eligible persons younger than age 65 yr identified as having ASD, ID, or both and to evaluate demographic factors associated with occupational therapy service utilization in this population. DESIGN: Retrospective, case-control, cohort study using claims records from Medicaid Analytic eXtract files (2009-2012). SETTING: Data from all 50 states and Washington, DC. PARTICIPANTS: Beneficiaries identified as having ASD only, ASD+ID, or ID only who were younger than age 18 yr (N = 664,214) and ages 18-64 yr (N = 702,338). Outcomes and Measures: We analyzed Current Procedural Terminology® and Healthcare Common Procedure Coding System procedure codes, Medicaid Statistical Information System type of service codes, and Center for Medicare & Medicaid Services provider specialty codes. RESULTS: Only 3.7% to 6.3% of eligible adult beneficiaries received occupational therapy; in contrast, 20.5% to 24.2% of children received occupational therapy. Significant predictors of service use varied by group; however, differences by race-ethnicity, eligibility on the basis of poverty, and geographic location were observed. Among children, the most frequent billing code was for "therapeutic activities" (43%-60%); among adults, it was "community/work reintegration training" (29%-39%). CONCLUSIONS AND RELEVANCE: Billed procedure code patterns do not consistently reflect the unique occupational focus that occupational therapy providers deliver to people with developmental disabilities. Disparities in occupational therapy receipt warrant further attention to understand the social and structural factors affecting service delivery. What This Article Adds: Occupational therapy services paid for by Medicaid are used more frequently by children with ASD and ID than by adults with these diagnoses. Greater understanding of the intersectional factors that drive service delivery and disparities is needed.

Are Developmental Monitoring and Screening Better Together for Early Autism Identification Across Race and Ethnic Groups?

National Surveys of Children's Health (NSCH, 2016-2018) data were analyzed to determine if conjoint monitoring and screening showed stronger associations with children under 5 identified with ASD compared to monitoring alone, screening alone or no monitoring or screening; and investigate relationships between monitoring and screening across racial/ethnic subgroups. 86 of 332 children with ASD received their diagnosis in a timeframe suggesting potential monitoring and screening for identification purposes. Analyses showed that conjoint monitoring and screening and monitoring alone, but not screening alone, was associated with early identified ASD cases across race groups. Caution is warranted as interpreting NSCH monitoring and screening items solely for identification purposes is inaccurate in many cases. More research on monitoring with screening is needed.

Race/ethnic inequities in conjoint monitoring and screening for U.S. children 3 and under.

BACKGROUND: Non-White children with developmental disabilities are frequently identified later than White children and therefore miss out on opportunities for early intervention (EI). Recent research indicates that conjoint monitoring and screening is more strongly associated with EI receipt than monitoring or screening alone. OBJECTIVE: To determine if there are racial/ethnic inequities in the conjoint receipt of monitoring and screening. METHOD: A series of survey weighted and stratified logistic regression analyses were conducted on National Surveys of Children's Health (2016-2018) data with conjoint monitoring and screening, screening alone, monitoring alone, and non-receipt as outcomes for children aged 9-23 months of age. The primary predictor was child race/ethnicity (Black, Hispanic, Other, and White). Additional co-variates included child (e.g., Age), caretaker/family (e.g., poverty level), healthcare (e.g., usual source of healthcare), state EI policies, and city metropolitan status. RESULTS: Bivariate analyses indicated significant variation in conjoint monitoring and screening across racial/ethnic groups and covariates. Bivariate analyses showed that Black and Hispanic children had significantly lower odds of conjoint monitoring and screening receipt than White children. Multivariate analyses showed that this relationship was better accounted by co-variates. The health service variable, usual source of healthcare, had the strongest relationship with receipt of conjoint monitoring and screening. CONCLUSIONS: Black and Hispanic children are less likely to receive conjoint monitoring and screening than White children. Analyses investigating the role of usual source of healthcare seem particularly promising for understanding the sources of inequities in monitoring and screening receipt.

Creation of a Longitudinal Legal Data Set to Support Legal Epidemiology Studies of Mental Health Insurance Legislation.

OBJECTIVE: This article describes policy surveillance methodology used to track changes in the comprehensiveness of state mental health insurance laws over 23 years, resulting in a data set that supports legal epidemiology studies measuring effects of these laws on mental health outcomes. METHODS: Structured policy surveillance methods, including a coding protocol, blind coding of laws in 10% of states, and consensus meetings, were used to track changes in state laws from 1997 through 2019-2020. The legal database Westlaw was used to identify relevant statutes. The legal coding instrument included six questions across four themes: parity, mandated coverage, definitions of mental health conditions, and enforcement-compliance. Points (range 0-7) were assigned to reflect the laws' comprehensiveness and aid interpretation of changes over time. RESULTS: The search resulted in 147 coding time periods across 51 jurisdictions (50 states, District of Columbia). Intercoder consensus rates increased from 89% to 100% in the final round of blinded duplicate coding. Since 1997, average comprehensiveness scores increased from 1.31 to 3.82. In 1997, 41% of jurisdictions had a parity law, 28% mandated coverage, 31% defined mental health conditions, and 8% required state agency enforcement. In 2019-2020, 94% of jurisdictions had a parity law, 63% mandated coverage, 75% defined mental health conditions, and 29% required state enforcement efforts. CONCLUSIONS: Comprehensiveness of state mental health insurance laws increased from 1997 through 2019-2020. The State Mental Health Insurance Laws Dataset will enable evaluation research on effects of comprehensive legislation and cumulative impact.

Interventions in the Scope of Occupational Therapy to Improve Psychosocial Well-Being in Older Adults with Low Vision and Mental Health Concerns: A Systematic Review.

Research has found that occupational therapy practitioners focus on functional and participation outcomes in the low vision population, but overlook corresponding psychosocial outcomes in rehabilitation. The purpose of this systematic review is to answer the PICO question: "What is the evidence to support interventions within the scope of occupational therapy for improving psychosocial well-being or quality of life in adults experiencing depression or anxiety as a result of low vision?" The team conducted a search of literature published between 2008 and 2020. Inclusion criteria consisted of interventions within the scope of occupational therapy for patients with low vision, and which measured mental health or quality of life factors. Eleven articles met inclusion criteria. The majority of the evidence consisted of 1B (45%) and 2B (36%) level randomized control trials. Two studies were 3B level evidence. Mental health outcomes were measured primarily using depression rating scales, although a number of studies also utilized vision-specific quality of life questionnaires. Established intervention themes included behavioral activation plus occupational therapy low vision rehabilitation, cognitive problem-solving approaches, usual care 'plus' skill-based training, and group service delivery approaches. Moderate evidence supports behavioral activation plus occupational therapy low vision rehabilitation, problem-solving approaches, and group service delivery approaches for improving mental health outcomes. There is moderate evidence that does not support usual treatment 'plus' skill-based training to improve mental health.

Impact of Mental Health Insurance Legislation on Mental Health Treatment in a Longitudinal Sample of Adolescents.

BACKGROUND: Mental health insurance laws are intended to improve access to needed treatments and prevent discrimination in coverage for mental health conditions and other medical conditions. OBJECTIVES: The aim was to estimate the impact of these policies on mental health treatment utilization in a nationally representative longitudinal sample of youth followed through adulthood. METHODS: We used data from the 1997 National Longitudinal Survey of Youth and the Mental Health Insurance Laws data set. We specified a zero-inflated negative binomial regression model to estimate the relationship between mental health treatment utilization and law exposure while controlling for other explanatory variables. RESULTS: We found that the number of mental health treatment visits declined as cumulative exposure to mental health insurance legislation increased; a 10 unit (or 10.3%) increase in the law exposure strength resulted in a 4% decline in the number of mental health visits. We also found that state mental health insurance laws are associated with reducing mental health treatments and disparities within at-risk subgroups. CONCLUSIONS: Prolonged exposure to comprehensive mental health laws across a person's childhood and adolescence may reduce the demand for mental health visitations in adulthood, hence, reducing the burden on the payors and consumers. Further, as the exposure to the mental health law strengthened, the gap between at-risk subgroups was narrowed or eliminated at the highest policy exposure levels.

Racial and ethnic disparities in benefits eligibility and spending among adults on the autism spectrum: A cohort study using the Medicare Medicaid Linked Enrollees Analytic Data Source.

BACKGROUND: Research on children and youth on the autism spectrum reveal racial and ethnic disparities in access to healthcare and utilization, but there is less research to understand how disparities persist as autistic adults age. We need to understand racial-ethnic inequities in obtaining eligibility for Medicare and/or Medicaid coverage, as well as inequities in spending for autistic enrollees under these public programs. METHODS: We conducted a cross-sectional cohort study of U.S. publicly-insured adults on the autism spectrum using 2012 Medicare-Medicaid Linked Enrollee Analytic Data Source (n = 172,071). We evaluated differences in race-ethnicity by eligibility (Medicare-only, Medicaid-only, Dual-Eligible) and spending. FINDINGS: The majority of white adults (49.87%) were full-dual eligible for both Medicare and Medicaid. In contrast, only 37.53% of Black, 34.65% Asian/Pacific Islander, and 35.94% of Hispanic beneficiaries were full-dual eligible for Medicare and Medicare, with most only eligible for state-funded Medicaid. Adjusted logistic models controlling for gender, intellectual disability status, costly chronic condition, rural status, county median income, and geographic region of residence revealed that Black beneficiaries were significantly less likely than white beneficiaries to be dual-eligible across all ages. Across these three beneficiary types, total spending exceeded $10 billion. Annual total expenditures median expenditures for full-dual and Medicaid-only eligible beneficiaries were higher among white beneficiaries as compared with Black beneficiaries. CONCLUSIONS: Public health insurance in the U.S. including Medicare and Medicaid aim to reduce inequities in access to healthcare that might exist due to disability, income, or old age. In contrast to these ideals, our study reveals that racial-ethnic minority autistic adults who were eligible for public insurance across all U.S. states in 2012 experience disparities in eligibility for specific programs and spending. We call for further evaluation of system supports that promote clear pathways to disability and public health insurance among those with lifelong developmental disabilities.

Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project.

LAY ABSTRACT: Autistic adults commonly experience mental health conditions. However, research rarely involves autistic adults in deciding priorities for research on mental healthcare approaches that might work for them. The purpose of this article is to describe a stakeholder-driven project that involved autistic adults in co-leading and designing research about priorities to address mental health needs. Through a large online survey, two large meetings, and three face-to-face focus group discussions involving over 350 stakeholders, we identified five priorities for mental health research desired by autistic adults. These priorities and preferred outcomes should be used to guide research and practice for autistic adults.

Interventions to address health outcomes among autistic adults: A systematic review.

LAY ABSTRACT: Autistic adults have more health problems then their same-aged peers. Yet little research has been conducted that focuses on addressing these health problems. In order to guide future research, it is important to know what intervention studies have been done to improve health outcomes among autistic adults. The project team and student assistants read studies that were published between 2007 and 2018 in the online research database, PubMed. We looked for studies published in English, which were peer-reviewed and included (1) an intervention, (2) an outcome that was related to health, and (3) a study group that included autistic adults. We did not include studies that had outcomes about employment (unless there was a health outcome), studies about caregivers or caregiving, or expert opinions about interventions. Of 778 reviewed articles, 19 studies met all of the criteria above. Within these studies, two approaches were found to have emerging evidence for their use in autistic adults: cognitive behavioral interventions and mindfulness-based approaches for improved mental health outcomes. The remaining intervention approaches did not have enough articles to support their use. Many of the outcomes were about reduced symptoms of co-occurring mental health diagnoses (e.g. reduced anxiety, depression). Most of the participants in these studies were male and did not have intellectual disability. Most study participants were adults younger than 40. There are not many intervention studies that address health outcomes among autistic adults. More research is needed on interventions which are desired by the adult autism community and address preferred health outcomes such as increased quality of life or well-being.