Date Presented 04/02/2022 Children and youth with autism spectrum disorder (ASD) use educational services for their complex needs. We analyzed the 2016/2017 National Survey of Children’s Health to examine the association between... more
Date Presented 04/02/2022 Children and youth with autism spectrum disorder (ASD) use educational services for their complex needs. We analyzed the 2016/2017 National Survey of Children’s Health to examine the association between inadequate medical home primary care (MHPC) and educational service use in children with ASD. Inadequate MHPC was significantly associated with higher odds of educational service use. After adjustment, inadequate MHPC was significantly associated with lower odds of educational service use. Primary Author and Speaker: Sabrin Rizk Contributing Authors: Emmanuel Ngui, Teal Benevides, Victoria A. Moerchen, Mary Alunkal Khetani, Kris Barnekow
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Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. The purpose of this study was to evaluate the current literature that exists for telehealth interventions for chronic disease... more
Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. The purpose of this study was to evaluate the current literature that exists for telehealth interventions for chronic disease self-management within the scope of OT. This scoping review will benefit the OT profession by furthering the body of evidence on telehealth self-management interventions while also promoting the continuation of research on telehealth to complement developing technologies and practices. Primary Author and Speaker: Elizabeth B. Albritton Additional Authors and Speakers: Josephine Fish, Jeffrey Henkel, Shelby Lee, Rachel Luttrell, and Rachel Rackleff Contributing Authors: Pamalyn Kearney, Teal Benevides
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Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. There is a need for a modernized quality-of-life (QoL) definition and a greater distinction between global and health-related... more
Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. There is a need for a modernized quality-of-life (QoL) definition and a greater distinction between global and health-related quality of life (HRQoL) for people with amyotrophic lateral sclerosis (PALS). The available assessments are intended to interpret global quality of life and HRQoL for PALS. OT practitioners will be able to use the research to determine a comprehensive definition of QoL and the appropriate QoL assessment to use for PALS in clinical practice. Primary Author and Speaker: Addie Broom Additional Authors and Speakers: Hannah Prescott, Mallorie Savage, Addie Broom, Emily Crawford, Mackenzie Franklin, Teal Benevides, Stephanie Johnson
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Date Presented 04/04/19 Musculoskeletal disorders, including the elbow, wrist, and hand, are very common disabilities worldwide. Patients who experience elbow, wrist, and hand musculoskeletal pain are frequently seen in outpatient... more
Date Presented 04/04/19 Musculoskeletal disorders, including the elbow, wrist, and hand, are very common disabilities worldwide. Patients who experience elbow, wrist, and hand musculoskeletal pain are frequently seen in outpatient therapy. Using a sample of 89,422 patients from 3,400 outpatient clinics, this session will identify immutable and mutable factors that are the best predictors of a high functional recovery. Primary Author and Speaker: Jason Hughes Additional Authors and Speakers: Teal Benevides, Pamalyn Kearney, Michael Iwama, Leigh Lehman Contributing Authors: Ying-Chih Wang
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Background: This session will present the findings from Phase 1 (Feasiblity) of a 3 year RCT designed to study a manualized protocol of occupational therapy to reduce maladaptive sensory behaviors and enhance participation and quality of... more
Background: This session will present the findings from Phase 1 (Feasiblity) of a 3 year RCT designed to study a manualized protocol of occupational therapy to reduce maladaptive sensory behaviors and enhance participation and quality of life for children with autism and their family. Children with autism exhibit many behaviors that may have a sensory basis including self stimulating behaviors, avoiding behaviors (such as placing hands over ears in response to typical levels of auditory input), sensory seeking behaviors (twirling, chewing, etc) and/or “tuning out” behaviors such as not responding to their name or other environmental sensory cues. Although it is clear that these behaviors significantly impact the child and families ability to participate in daily activities, and families report that they are among the most debilitating symptoms for their children, data supporting interventions to specifically address the behaviors from a sensory perspective are sparse and lack eviden...
Background: This paper reports on a study of the effectiveness of occupational therapy strategies to reduce sensory dysfunction and enhance adaptive behaviors and participation for children with ASD and their family. Unusual responses to... more
Background: This paper reports on a study of the effectiveness of occupational therapy strategies to reduce sensory dysfunction and enhance adaptive behaviors and participation for children with ASD and their family. Unusual responses to sensation or sensory dysfunction (SD) are extremely prevalent (80-90%) in individuals with Autism Spectrum Disorders (ASD), contributing to the maladaptive behavioral profile of these disorders and limiting participation in daily life activities. Children with ASD exhibit SD in many ways including self stimulating behaviors, avoiding behaviors (such as placing hands over ears in response to typical levels of auditory input), sensory seeking behaviors (twirling, chewing, etc) and/or “tuning out” behaviors such as not responding to their name or other environmental sensory cues. Families report that SD significantly restricts full participation in daily activities and consequently, interventions to address SD are among the most often requested service...
Research Interests: Education, Occupational Therapy, Autism Spectrum Disorders, Self Care, Treatment Outcome, and 12 moreHumans, Child, Intervention, Female, Male, Psychological Intervention, Caregivers, Autism Spectrum Disorder, Autistic disorder, Child preschool, Psychology and Cognitive Sciences, and Sensory functions
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... more
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...
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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... more
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.
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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... more
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 ...
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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... more
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 f...
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The Author(s) 2013. This article is published with open access at Springerlink.com Abstract This study evaluated a manualized intervention for sensory difficulties for children with autism, ages 4–8 years, using a randomized trial design.... more
The Author(s) 2013. This article is published with open access at Springerlink.com Abstract This study evaluated a manualized intervention for sensory difficulties for children with autism, ages 4–8 years, using a randomized trial design. Diagnosis of autism was confirmed using gold standard measures. Results show that the children in the treatment group (n = 17) who received 30 sessions of the occupational therapy intervention scored significantly higher (p = 0.003, d = 1.2) on Goal Attainment Scales (primary outcome), and also scored significantly better on measures of caregiver assistance in self-care (p = 0.008 d = 0.9) and socialization (p = 0.04, d = 0.7) than the Usual Care control group (n = 15). The study shows high rigor in its measurement of treatment fidelity and use of a manualized protocol, and provides support for the use of this inter-vention for children with autism. Findings are discussed in terms of their implications for practice and future research.
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,... more
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.
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Estimates of the total U.S. population living in non-metropolitan (rural) counties vary from 46.2 million to 59 million people. This represents 14% to 19% of the U.S. population. A recent AAMC report (Warshaw, 2017) addresses some of the... more
Estimates of the total U.S. population living in non-metropolitan (rural) counties vary from 46.2 million to 59 million people. This represents 14% to 19% of the U.S. population. A recent AAMC report (Warshaw, 2017) addresses some of the challenges of rural health and associated health disparities affecting millions in the U.S. Rural populations are culturally heterogeneous, are spread broadly across large areas of the U.S., and have different demographics (Douthit et al., 2015). Compared to urban areas, rural communities face higher poverty rates, lower educational attainment, lack of transportation, a higher proportion of elderly individuals, and lack of access to health services (Hunsaker & Kantayya, 2010; Ricketts, 2000). Owing to these factors, rural communities face elevated rates of morbidity and mortality and greater percentages of excess deaths from the five leading causes of death including cancer and cardiovascular disease (Garcia et al., 2019).
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ix Chapter 1: Introduction 1 Importance of the Problem 2 Needs of Children with ASD 2 Access to Medical and Therapy Services 3 Introduction to Andersen’s Behavioral Model of Access 7 Justification and Purpose of the Study 9 Purpose... more
ix Chapter 1: Introduction 1 Importance of the Problem 2 Needs of Children with ASD 2 Access to Medical and Therapy Services 3 Introduction to Andersen’s Behavioral Model of Access 7 Justification and Purpose of the Study 9 Purpose Statement, Research Questions, and Hypotheses 10 Significance of the Research 11 Summary 13 Chapter 2: Review of the Literature 14 Theoretical Basis for Understanding Access Problems in Children with ASD 14 Definition of Primary Constructs 17 Use of Therapy Services 17 Characteristics of the Individual 18 Contextual Characteristics Impacting Access 18
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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... more
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 metropol...
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Autistic adults are significantly more likely to experience co-occurring mental health conditions such as depression and anxiety. Although intervention studies are beginning to be implemented with autistic adults to address mental health... more
Autistic adults are significantly more likely to experience co-occurring mental health conditions such as depression and anxiety. Although intervention studies are beginning to be implemented with autistic adults to address mental health outcomes, little is known about what research autistic adults feel is needed, or what mental health outcomes are of value to them. The purpose of this article is to describe a project that involved more than 350 autistic adults and other stakeholders as coproducers of research priorities on mental health. Through a variety of methods including a large online survey, two large stakeholder meetings, and three face-to-face focus groups, the project team identified five top priorities for mental health research which should be incorporated by researchers and practitioners in their work with autistic adults. These included research to inform trauma-informed care approaches; societal approaches for inclusion and acceptance of autistic individuals; communi...
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Abstract 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... more
Abstract 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.
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Date Presented 03/28/20 A qualitative study was done evaluating the feasibility of implementing an adapted SEL curriculum in an urban elementary school. The curriculum was adapted by OT students to meet the learning needs of individuals... more
Date Presented 03/28/20 A qualitative study was done evaluating the feasibility of implementing an adapted SEL curriculum in an urban elementary school. The curriculum was adapted by OT students to meet the learning needs of individuals with unidentified disabilities. Primary Author and Speaker: Teal Benevides Additional Authors and Speakers: Margaret Bloder, McKenzie Lamb Contributing Authors: Taylor Crews, Tori Hutson, Delaney Knight, Sterling Su, Kim Barker
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Date Presented 03/26/20 We will share methods and lessons learned from engaging stakeholders in three US regions and connecting them nationally to build research capacity and partnerships. Research-capacity building is aimed at... more
Date Presented 03/26/20 We will share methods and lessons learned from engaging stakeholders in three US regions and connecting them nationally to build research capacity and partnerships. Research-capacity building is aimed at identifying stakeholder-driven priorities and outcomes in relation to organization-level OT interventions, how these interventions facilitate community participation, and ultimately impact health and well-being of individuals with intellectual and developmental disabilities. Primary Author and Speaker: Tracy Jirikowic Additional Authors and Speakers: Roger Ideishi, Roxanna Bendixen, Teal Benevides
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Date Presented 03/26/20 The purpose of this presentation is to share the results of a two-year priority-setting PCORI engagement award conducted in collaboration with the autistic adult community. Engagement lessons learned will inform... more
Date Presented 03/26/20 The purpose of this presentation is to share the results of a two-year priority-setting PCORI engagement award conducted in collaboration with the autistic adult community. Engagement lessons learned will inform future research activities with this population. Products shared include an engagement and compensation guide and examples of effective engagement activities. Primary Author and Speaker: Teal Benevides Additional Authors and Speakers: Stephen Shore
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Research has shown that autistic adults have poor health outcomes. We conducted a systematic review to identify existing interventions to address health outcomes for autistic adults and to determine whether these interventions address the... more
Research has shown that autistic adults have poor health outcomes. We conducted a systematic review to identify existing interventions to address health outcomes for autistic adults and to determine whether these interventions address the priorities of the autistic community. We searched PubMed for articles that included an intervention, a primary health outcome measured at the individual (not system) level, and a sample population of at least 50% autistic adults. Studies were excluded if they were not peer-reviewed, had a focus on caregivers, were expert opinions on specific interventions, untested protocols, or interventions without a primary health outcome. Out of the 778 articles reviewed, 19 were found to meet the stated criteria. Based on the evidence gathered, two were considered emerging evidence-based approaches: cognitive behavioral approaches and mindfulness. The remaining interventions included in the review did not have sufficient evidence to support current use with th...
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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... more
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.
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Date Presented 04/04/19 Little is known about how families from different racial and ethnic backgrounds report family impact associated with caregiving children with autism. We examined family impact variables among caregivers from... more
Date Presented 04/04/19 Little is known about how families from different racial and ethnic backgrounds report family impact associated with caregiving children with autism. We examined family impact variables among caregivers from different racial and ethnic backgrounds from the National Survey of Children with Special Healthcare Needs (n=5,178) and found significant differences on financial spending and time spent caregiving. These differences may impact providers' work to engage in culturally relevant therapy. Primary Author and Speaker: Teal Benevides Contributing Authors: Jiwon Lee, Jessica Franks, Nonye Nwosu
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Abstract Background Individuals on the autism spectrum are at greater risk for a variety of co-occurring psychiatric and medical conditions, which could result in greater emergency department (ED) use. We aimed to identify rates of ED... more
Abstract Background Individuals on the autism spectrum are at greater risk for a variety of co-occurring psychiatric and medical conditions, which could result in greater emergency department (ED) use. We aimed to identify rates of ED utilization among transition-age young adults with autism and examine predictors of utilization in a U.S. national data source. Methods We conducted a retrospective analysis of Centers for Medicare and Medicaid 2010 Limited Data Set claims from Inpatient and Outpatient files. Medicare beneficiaries aged 18–25 years from three groups were included: autism spectrum disorder (ASD) and no intellectual disability (ID), ASD and ID, and ID-only. Primary outcomes were annual ED visit counts and dichotomous presence of ED visit in claim year. Results Between 43–54% of adults with ASD had an ED visit in the past claim year. Significant predictors of greater ED utilization among adults with ASD included: intellectual disability (IRR=1.19, 95%CI:1.09–1.30), psychiatric utilization in the claim year (IRR=1.42, 95%CI:1.28–1.57), and greater comorbidities as assessed with ACG® risk score (IRR=1.18, 95%CI:1.15–1.20). Minority status was associated with less ED utilization among adults with ASD (IRR=0.86, 95%CI:0.78–0.94). Adults with ASD had significantly fewer annual ED visits than adults with ID-only after controlling for other variables. Conclusions Prevention efforts to reduce ED utilization, especially for those with ID and ASD with co-occurring psychiatric conditions, is warranted. Primary care providers and case managers should develop care plans to reduce the likelihood for emergency psychiatric utilization and ensure alternative care pathways. ED clinicians may require additional training to address the needs of this population when they present to the ED in crisis.
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Date Presented 4/21/2018 Racial and ethnic disparities in service access for children with autism disproportionately impact African-American families. This qualitative study identified caregiver beliefs, knowledge, and expectations that... more
Date Presented 4/21/2018 Racial and ethnic disparities in service access for children with autism disproportionately impact African-American families. This qualitative study identified caregiver beliefs, knowledge, and expectations that influenced their help seeking and the specific help-seeking steps they used to obtain care. Primary Author and Speaker: Teal Benevides Additional Authors and Speakers: Beth DeGrace, Pam Kearney Contributing Authors: Mallory Lanier, Sharon Cosper
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Date Presented 3/30/2017 Our study of Medicare claims found that young adults with autism spectrum disorder (N > 5,500) experienced low rates of preventive and occupational therapy (OT) and physical therapy service use and high rates... more
Date Presented 3/30/2017 Our study of Medicare claims found that young adults with autism spectrum disorder (N > 5,500) experienced low rates of preventive and occupational therapy (OT) and physical therapy service use and high rates of emergency department use. There is a need for wellness and preventive services, creating opportunities for OT to develop interventions to improve care. Primary Author and Speaker: Teal W. Benevides Contributing Authors: Henry Carretta, Katelyn Graves
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Research Interests: Poverty, Health insurance, Cerebral Palsy, Adolescent, Medicine, and 13 moreHumans, Child, United States, Female, Male, Infant, Autism Spectrum Disorder, Disabled children, Cross Sectional Studies, Child preschool, Attention deficit disorder with hyperactivity, Health Services Accessibility, and Medical and Health Sciences
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... more
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 provis...
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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... more
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....
Research Interests: Medicine, Humans, Child, Needs Assessment, Female, and 13 moreMale, Autism Spectrum Disorder, Disabled children, Maternal child health, Cross Sectional Studies, Child Health Services, Socioeconomic Factors, Surveys and Questionnaires, Health Services Accessibility, Health Care Surveys, Quality of health care, healthcare disparities, and Medical and Health Sciences
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... more
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. 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. Compared with caregivers of white non-Hispanic children with ASD, caregivers of Hispanic children reported less need for prescription medications in adjusted multiva...
Research Interests: Psychology, Pediatrics, Medicine, Humans, Child, and 11 moreNeeds Assessment, United States, Caregivers, Ethnic Groups, Autism Spectrum Disorder, Clinical Sciences, Public health systems and services research, attitude to health, Health Care Surveys, Psychology and Cognitive Sciences, and Medical and Health Sciences
Date Presented 4/17/2015 Children with autism spectrum disorder (ASD) are significantly more likely to have an unmet need for therapy than children with attention-deficit/hyperactivity disorder (ADHD), but they are similar in unmet needs... more
Date Presented 4/17/2015 Children with autism spectrum disorder (ASD) are significantly more likely to have an unmet need for therapy than children with attention-deficit/hyperactivity disorder (ADHD), but they are similar in unmet needs compared with children with cerebral palsy (CP). We identify barriers to appropriate care in children with special health care needs and areas for future inquiry.
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Background: Upwards of 90% of individuals with Autism Spectrum Disorders (ASD) demonstrate unusual responses to sensory stimuli or sensory differences including hypo and hyper sensitivity in multiple and varied sensory domains (Tomchek... more
Background: Upwards of 90% of individuals with Autism Spectrum Disorders (ASD) demonstrate unusual responses to sensory stimuli or sensory differences including hypo and hyper sensitivity in multiple and varied sensory domains (Tomchek and Dunn, 2007; Marco, Leighton, Hinkley, et al 2011). Our work, to date, shows that families report that these sensory differences create social isolation for them and their child, significantly restricting full participation in daily activities. Consequently, interventions to address sensory differences are among the most often requested services, and, although data on their effectiveness is promising, more rigorous trials are needed. Objectives: To address this need, our program of research developed an intervention for sensory differences entitled Intervention using Sensory Integration for Children with Autism or InSInc; and completed a pilot study to evaluate feasibility, safety, acceptability, satisfaction and fidelity. Next we conducted a small...
The autonomic nervous system (ANS) is responsible for multiple physiological responses, and dysfunction of this system is often hypothesized as contributing to cognitive, affective, and behavioral responses in children. Research suggests... more
The autonomic nervous system (ANS) is responsible for multiple physiological responses, and dysfunction of this system is often hypothesized as contributing to cognitive, affective, and behavioral responses in children. Research suggests that examination of ANS activity may provide insight into behavioral dysregulation in children with autism spectrum disorders (ASD), however, there is wide variability in samples, methods, and measures reported. The purpose of this review is to describe frequently reported cardiac ANS measures; discuss theoretical models linking ANS measures with neurological structures; and synthesize pediatric literature using ANS measures on typical and ASD samples. Such a synthesis will provide researchers with a foundation for the use of ANS cardiac methods and measures in ASD research.
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The purpose of this qualitative study was to explore the lived experience of how sensory-related behaviors of children with autism affected family routines. In-depth semi-structured interviews were conducted with four primary caregivers... more
The purpose of this qualitative study was to explore the lived experience of how sensory-related behaviors of children with autism affected family routines. In-depth semi-structured interviews were conducted with four primary caregivers regarding the meaning and impact of their child’s sensory-related behaviors on family routines that occurred inside and outside the home. Findings indicated that sensory behaviors are one factor that limited family participation in work, family and leisure activities; and that parents employed specific strategies to manage individual and family routines in light of the child’s sensory-related behaviors. This information has important implications for professionals who work with families of children with autism to decrease caregiver stress and to increase life satisfaction for the child and family.
Research Interests: Psychology, Cognitive Science, Perception, Autism, Cognition, and 15 morePhenomenology, Attention, Medicine, Information Processing, Activities of Daily Living, Life Satisfaction, Interviews, Humans, Child, Female, Cost of Illness, Leisure Activities, Nino, Autistic disorder, and Child behavior disorders
Objective: To examine the feasibility, safety, and acceptability of a manualized protocol of occupational therapy using sensory integration principles for children with autism. Methods: Ten children diagnosed with autism spectrum disorder... more
Objective: To examine the feasibility, safety, and acceptability of a manualized protocol of occupational therapy using sensory integration principles for children with autism. Methods: Ten children diagnosed with autism spectrum disorder ages 4-8 years received intensive occupational therapy intervention using sensory integration principles following a manualized protocol. Measures of feasibility, acceptability and safety were collected from parents and interveners, and fidelity was measured using a valid and reliable fidelity instrument. Results: The intervention is safe and feasible to implement, acceptable to parents and therapist, and therapists were able to implement protocol with adequate fidelity. These data provide support for implementation of a randomized control trial of this intervention and identify specific procedural enhancements to improve study implementation.
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Parents of children with autism frequently report that their children exhibit unusual responses to sensory experiences. Little research is available, however, describing how parents’ and children’s culture and environment might influence... more
Parents of children with autism frequently report that their children exhibit unusual responses to sensory experiences. Little research is available, however, describing how parents’ and children’s culture and environment might influence parents’ reports of their children’s behaviors. This study compared the frequency of parent-reported responses to sensory experiences in children from two countries—Israel and the United States. We administered the Short Sensory Profile to primary caregivers of children with autism spectrum disorders (ASD) and typically developing peers. Results indicate that Israeli parents reported unusual responses to sensory experiences less frequently than U.S. parents for both ASD and typically developing children. U.S. children with ASD demonstrated significantly greater difficulty in the Auditory Filtering and Visual/Auditory Sensitivity domains than Israeli children with ASD. These findings indicate a need to further explore the influence of culture and env...