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.

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.

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.

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.

Suicidal Ideation and Self-inflicted Injury in Medicare Enrolled Autistic Adults With and Without Co-occurring Intellectual Disability.

Suicidality is significantly more common in autistic adults than the general population, yet the factors that increase risk for suicidality among autistic adults remain largely unknown. We identified characteristics associated with suicidal ideation and suicide attempts/self-inflicted injury in a U.S. national sample of Medicare-enrolled autistic adults. We conducted a case-control study of autistic adults aged 18-59 years (n = 21,792). Younger age, white race, depression disorders, and psychiatric healthcare utilization were associated with increased odds of suicidal ideation and suicide attempts. Co-occurring intellectual disability was associated with significantly greater odds of a suicide attempt, but lower odds of suicidal ideation. Findings underscore the need for improved methods to identify ideation prior to attempt among adults with autism and intellectual disability.

Correction to: Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: Findings from the National Survey of Children with Special Health Care Needs.

The original version of this article unfortunately contained a mistake. The copyright permission below in Table 2 was inadvertently not published in the article.

Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: Findings from the National Survey of Children with Special Health Care Needs.

Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.

Case Identification and Characterization of Autistic Young Adults in 2010 Medicare Fee-for-Service Claims.

Background: Medicare is a public insurer for whom many autistic adults are eligible in the United States, but little is known about autistic beneficiaries who are covered. A challenge in using claim data is identification of autism spectrum disorder (ASD) cases to ensure accurate characterization. Some work suggests that relying on one claim could identify probable ASD, although other works indicate that two claims are necessary for case identification. The purpose of the current study was to describe the sample of Medicare young adult beneficiaries, and determine whether using a 1+ versus 2+ claim case identification resulted in similar interpretation of sample demographic characteristics and primary care utilization patterns in Medicare professional service claims. Methods: We used Medicare Limited Data Sets (2008-2010) claims. After ASD case identification using ICD-9-CM (299.xx), 527 unique beneficiaries in the last claim year of 2010 professional service file were identified as having at least one claim of ASD. Of these, 69% (n = 364) had two or more claims. Proportions and zero-inflated negative binomial regression were used to examine differences in demographic characteristics and primary care utilization and costs for the 1+ and 2+ samples. Results: Medicare claims contain a sample of autistic adults with expected demographics identified in historic prevalence cohorts. No differences in age, gender, race/ethnicity, Hispanic status, or dual-eligibility months or Adjusted Clinical Groups (ACG)® concurrent risk scores were identified between the 1+ and 2+ samples. No difference was found in the overall estimation of primary care use or costs between the 1+ and 2+ samples based on Zellner's seemingly unrelated regression methods. Conclusions: This study is the first to describe a national sample of Medicare-insured autistic adults. We found that using a 1+ case identification results in a sample that is demographically similar to a 2+ claim sample, and produces similar estimates of utilization as a 2+ claim sample.

Analyzing State Autism Private Insurance Mandates for Allied Health Services: A Pilot Study.

Due to the prevalence, severity, and costs associated with autism spectrum disorders (ASDs), it has become a public health issue. In response, state governments have adopted ASD-specific private insurance mandates requiring coverage of ASD screening, diagnosis, and treatment. Despite rapid uptake of these laws, differences exist in the type and levels of coverage, especially for allied health services including occupational therapy. We piloted a structured legal research methodology to code ASD insurance mandates that impact allied health service provisions. State private insurance mandates were obtained from WestlawNext. A coding methodology was piloted on 14 states and included variables for age and service limits, treatments covered, and medical necessity. Coding methods were feasible and highly reliable among raters. Ten of 12 states had a coverage mandate, many with specific provisions for allied health providers. A full analysis of all 50 states is warranted to identify provisions affecting allied health providers serving individuals with ASD.

Therapy access among children with autism spectrum disorder, cerebral palsy, and attention-deficit-hyperactivity disorder: a population-based study.

AIM: This study examined cross-sectional population-based rates in reported need and unmet need for occupational, physical, and speech therapy services in children with autism spectrum disorder (ASD) compared with children with attention-deficit-hyperactivity disorder (ADHD) and cerebral palsy (CP). METHOD: The 2005-2006 and 2009-2010 (USA) National Survey of Children with Special Health Care data sets were used to compare therapy need and unmet need among children younger than 18 years with ASD (n=5178), ADHD (n=20 566), and CP (n=1183). Bivariate approaches and multivariate logistic regression using imputed data were used to identify associations between child and family characteristics, and access to therapy services. RESULTS: After adjusting for other variables, children with ASD had a significantly greater likelihood of having an unmet therapy need compared with children with ADHD (odds ratio [OR] 1.66, 95% confidence interval [CI] 1.36-2.03), but a similar unmet need as children with CP (OR 1.30, 95% CI 0.97-1.74). Factors associated with unmet need included survey year, younger child age, no health insurance, and increased functional and behavioral difficulties. INTERPRETATION: Children in our sample had greater unmet therapy needs in 2009 than in 2005. Caregiver-reported reasons for unmet need included cost and school resources. Research examining future trends in therapy access are warranted for children with ASD and CP. WHAT THIS PAPER ADDS: Children with complex diagnoses of autism spectrum disorder and cerebral palsy had reported unmet need for therapy services. High costs of therapy were the primary reported reason contributing to reduced access among children.

Differences in Perceived Need for Medical, Therapeutic, and Family Support Services Among Children With ASD.

OBJECTIVE: Identifying racial and ethnic differences in perceived need for treatment among families of children with autism spectrum disorder (ASD) will improve understanding of disparities in care seeking. We described racial and ethnic differences in perceived need for services that children with ASD and their families frequently use. METHODS: We conducted bivariate analyses of racial and ethnic categories and perceived need for 6 common services used by children with ASD as found in the 2005 to 2006 (n = 2123) and the 2009 to 2010 (n = 3055) National Survey of Children With Special Health Care Needs data sets. Multivariate logistic regressions within concatenated data sets were conducted to examine associations between racial and ethnic category and perceived service needs while controlling for predisposing, enabling, and child factors. RESULTS: Compared with caregivers of white non-Hispanic children with ASD, caregivers of Hispanic children reported less need for prescription medications in adjusted multivariate analyses. Caregivers of black non-Hispanic children with ASD reported less need for prescription medications and for child and family mental health services than caregivers of white non-Hispanic children. Both English-speaking Hispanic caregivers and black non-Hispanic caregivers reported greater need for occupational, speech, and physical therapy than white non-Hispanic caregivers. No racial or ethnic differences were found in perceived need for specialty medical care or respite care. CONCLUSIONS: Caregivers of children with ASD from different racial and ethnic backgrounds may differentially perceive need for different types of care. Their perceptions may in turn affect how they prioritize and seek care, independent of their child's specific needs.

Unmet Need for Therapy Among Children with Autism Spectrum Disorder: Results from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs.

OBJECTIVES: We examined population-based trends in unmet need for therapy service in children with autism spectrum disorder (ASD) compared to other children with special health care needs (CSHCN), and identified factors associated with unmet need for therapy. METHODS: A pooled cross-sectional comparison of the 2005-2006 and 2009-2010 waves of the National Survey for Children with Special Health Care Needs (NS-CSHCN) was used. Weighted bivariate analyses were used to compare children ages 3-17 years with ASD (n = 5113) to other CSHCN (n = 71,294) on unmet need for therapy services. Survey weighted multivariate models were used to examine child, family, and contextual characteristics associated with unmet need. RESULTS: A greater percentage of children with ASD across both surveys were reported to need therapy than other children with CSHCN. Among children with a reported need, children with ASD were 1.4 times more likely to report an unmet need for therapy compared to other CSHCN (OR 1.42, 95 % CI 1.18-1.71). Variables significantly associated with unmet need for therapy services included not receiving a well-child visit in the past year (OR 5.81, CI 3.83-8.81), surveyed in 2009 (OR 1.42, CI 1.18-1.71), child being female (OR 1.27, CI 1.05-1.53), uninsured (OR 1.72, CI 1.15-2.56), and having greater functional limitation (OR 2.44, CI 1.80-3.34). CONCLUSIONS FOR PRACTICE: Children with ASD require supportive services such as occupational, physical, and speech therapy but are less likely to receive such services than other CSHCN. Receiving a well-child visit in the past year was strongly associated with receipt of needed therapy services.

Impact of a Curricular Change on Perceived Knowledge, Skills, and Use of Evidence in Occupational Therapy Practice: A Cohort Study.

OBJECTIVE: We evaluated the impact of a curriculum revision that emphasized experiential use of evidence in clinical environments on occupational therapy graduates' attitudes, perceived knowledge and skill, and use of evidence in practice. METHODS: We used a retrospective cohort design to compare two curriculum cohorts of recent graduates exposed to different evidence-based practice (EBP) educational approaches. Responses on a validated survey of attitudes, knowledge/skill, and use of evidence in practice were compared using t tests and Mann-Whitney U tests for Cohort 1 (n = 63) and Cohort 2 (n = 62) graduates. RESULTS: Findings suggest similar attitudes and use of evidence between cohorts; Cohort 2 reported statistically greater perceived knowledge of and skill in EBP. CONCLUSIONS: Emphasis on experiential learning in school with reinforcement of skills in clinical learning environments is not sufficient to change graduates' use of evidence. Although the curriculum revision improved perceived knowledge/skill, our study suggests systems or other factors may influence use after graduation.

Autonomic dysregulation during sensory stimulation in children with autism spectrum disorder.

Autonomic nervous system (ANS) activity during sensory stimulation was measured in 59 children with autism spectrum disorder (ASD) ages 6-9 in comparison to 30 typically developing controls. Multivariate comparisons revealed significant differences between groups in the respiratory sinus arrhythmia (parasympathetic measure) vector of means across sensory stimuli (p = 0.02) and in change from domain to domain (p = 0.01). Sympathetic activity, measured by pre-ejection period, did not differ significantly between groups, although it was higher in ASD participants. Findings suggest that participants with ASD demonstrated a different pattern of parasympathetic activity during sensory stimulation. Findings are discussed in relation to the biological mechanisms of sensory processing in autism, insight into the autism phenotype, and the utility of ANS activity as an outcomes marker.