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.

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 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.

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.

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.

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.

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.

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.

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.

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.

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.

Comprehensiveness of State Insurance Laws and Perceived Access to Pediatric Mental Health Care.

Importance: Many US children and adolescents with mental and behavioral health (MBH) conditions do not access MBH services. One contributing factor is limited insurance coverage, which is influenced by state MBH insurance parity legislation. Objective: To investigate the association of patient-level factors and the comprehensiveness of state MBH insurance legislation with perceived poor access to MBH care and perceived inadequate MBH insurance coverage for US children and adolescents. Design, Setting, and Participants: This retrospective cross-sectional study was conducted using responses by caregivers of children and adolescents aged 6 to 17 years with MBH conditions in the National Survey of Children's Health and State Mental Health Insurance Laws Dataset from 2016 to 2019. Data analyses were conducted from May 2022 to January 2024. Exposure: MBH insurance legislation comprehensiveness defined by State Mental Health Insurance Laws Dataset (SMHILD) scores (range, 0-7). Main Outcomes and Measures: Perceived poor access to MBH care and perceived inadequacy of MBH insurance were assessed. Multivariable regression models adjusted for individual-level characteristics. Results: There were 29 876 caregivers of children and adolescents with MBH conditions during the study period representing 14 292 300 youths nationally (7 816 727 aged 12-17 years [54.7%]; 8 455 171 male [59.2%]; 292 543 Asian [2.0%], 2 076 442 Black [14.5%], and 9 942 088 White [69.6%%]; 3 202 525 Hispanic [22.4%]). A total of 3193 caregivers representing 1 770 492 children and adolescents (12.4%) perceived poor access to MBH care, and 3517 caregivers representing 1 643 260 of 13 175 295 children and adolescents (12.5%) perceived inadequate MBH insurance coverage. In multivariable models, there were higher odds of perceived poor access to MBH care among caregivers of Black (adjusted odds ratio [aOR], 1.35; 95% CI, 1.04-1.75) and Asian (aOR, 1.69; 95% CI, 1.01-2.84) compared with White children and adolescents. As exposures to adverse childhood experiences (ACEs) increased, the odds of perceived poor access to MBH care increased (aORs ranged from 1.68; 95%, CI 1.32-2.13 for 1 ACE to 4.28; 95% CI, 3.17-5.77 for ≥4 ACEs compared with no ACEs). Compared with living in states with the least comprehensive MBH insurance legislation (SMHILD score, 0-2), living in states with the most comprehensive legislation (SMHILD score, 5-7) was associated with lower odds of perceived poor access to MBH care (aOR, 0.79; 95% CI, 0.63-0.99), while living in states with moderately comprehensive legislation (score, 4) was associated with higher odds of perceived inadequate MBH insurance coverage (aOR, 1.23; 95% CI, 1.01-1.49). Conclusions and Relevance: In this study, living in states with the most comprehensive MBH insurance legislation was associated with lower odds of perceived poor access to MBH care among caregivers for children and adolescents with MBH conditions. This finding suggests that advocacy for comprehensive mental health parity legislation may promote improved child and adolescent access to MBH services.

What do we know about autism and policing globally? Preliminary findings from an international effort to examine autism and the criminal justice system.

Research has demonstrated that autistic individuals have higher rates of police contact, however, research has seldom explored the fundamental reasons for these interactions and how this might vary across international contexts. To remedy this, the Global Autism and Criminal Justice Consortium created and disseminated the Global Criminal Justice Survey. Descriptive statistics of survey respondents with and without police contact were compared to glean differential characteristics. Frequency and type of recent police interactions (within the last 5 years) among autistic individuals were also examined to better contextualize the reasons that autistic individuals encounter police. Study findings indicated that across a global sample (i.e., North America, Scandinavia, Europe, and Oceania) nearly half of all autistic individuals had an interaction with police and that those with a history of police contact were usually older, had higher educational qualifications, and were more likely to have a co-occurring mental health or developmental disorder. Among types of interactions, noncriminal encounters, such as welfare checks, traffic incidents, wandering, and behaviors associated with autism, were most common, followed by autistic individuals alleging a crime was committed against them. These findings offer important directions for future research and for targeted policy responses that can address the unique needs of autistic individuals within the justice system.

Brief Report: Under-Identification of Symptomatic Menopause in Publicly-Insured Autistic People.

Menopause is a normal part of aging and in the general population is associated with chronic conditions that impact health, mortality, and well-being. Menopause is experienced differently by autistic individuals, although no studies have investigated this topic in a large sample. The purpose of this study was to investigate rates of, and factors associated with symptomatic menopause among autistic individuals and to identify the prevalence of co-occurring conditions in symptomatic individuals. We included autistic females aged 35-70 years enrolled for 10 + months in 2014-2016 Medicare and/or Medicaid (n = 26,904), excluding those with gender dysphoria. Those with symptomatic menopause were compared to a non-symptomatic reference group on demographic, enrollment characteristics, and co-occurring conditions through logistic regression. Approximately 4% of publicly-insured autistic females aged 46-70 years had symptomatic menopause in their medical records. Intellectual disability was associated with a lower likelihood of symptomatic menopause, and being Medicare-enrolled or dual-enrolled was associated with higher likelihood of having symptomatic menopause recorded. In adjusted models, rates of ADHD, anxiety and depressive disorders, headache/migraine, altered sensory experiences, altered sexual function, and sleep disturbance were significantly higher in the symptomatic menopause sample compared to the reference group. More work to better support autistic women in discussing menopausal symptoms and co-occurring conditions with primary care providers is needed, particularly among those for whom self-report of symptoms are more challenging to ascertain. Factors associated with specific types of health care coverage warrant greater investigation to support better identification.