Exploring Access and Barriers to Intervention Services for Children with Autism in the State of Georgia Open Access
Simon, Andrea Renee (2015)
Abstract
Research has shown that racial and socioeconomic disparities may exist in terms of age at diagnosis, access to and usage of services, and quality of long-term outcome for children with Autism Spectrum Disorder. The present investigation aimed to assess whether these types of disparities were present in a sample of 52 Georgia school-age children with autism. An additional goal was to determine what types of barriers families encounter when seeking services and what resources they have found to be most helpful in overcoming these barriers. The results of the study revealed that few children in Georgia were getting sufficient or appropriate care according to best-practice models. Furthermore, African Americans in the sample showed no significant differences compared to Caucasians neither in access to and usage of services nor symptom severity. However, more severe cognitive and adaptive functioning deficits were found in African Americans than in Caucasians. In regards to socioeconomic status, children of low socioeconomic status did not show any disparities in access to and usage of services, cognitive or adaptive functioning, nor symptom severity when compared with those of high socioeconomic status. However, within the low socioeconomic status participants, racial disparities in cognitive and adaptive functioning persisted that did not present in the high socioeconomic group. Finally, availability and quality seem to be the most frequent barriers that families encounter when seeking services. The results suggest that children with ASD in Georgia may already be at risk for insufficient and inappropriate care, regardless of race or socioeconomic status. Furthermore, being African American could be a risk factor for more severe cognitive and adaptive deficits that affect quality of long-term outcome, but these greater deficits did not seem to be accounted for in their treatment programming. Finally, high socioeconomic status may have acted as a protective factor from the more severe cognitive deficits in the sample's African Americans. Community and legislative leaders as well as professionals across the fields of Autism and Education must come together to create more community viable solutions that provide equal access across all races, ethnicities, and socioeconomic groups in the state of Georgia.
Table of Contents
Introduction 1
Research Questions and Goals 6
Review of the Literature 7
Prevalence and Diagnosis 7
Intervention and Outcome 8
The Individuals with Disabilities Education Act (IDEA) 10
Individualized Education Plan (IEP) 11
Disparities 12
Racial and Ethnic Disparities 13
Socioeconomic Disparities 13
Methodology 15
Purpose 15
Participants 15
Measures 16
Parent/Caregiver Questionnaire 16
Family Demographics Questionnaire 17
Differential Ability Scales, Second Edition 17
Autism Diagnostic Observation Schedule, Second Edition - Calibrated Severity Score 17
Vineland Adaptive Behavior Scales, Second Edition, Survey Form 18
Interview on Barriers to Services 18
Statistical Analyses 19
Sample Composition, Descriptive Statistics, and Correlations 19
General Access to Care 19
Disparities 20
Barriers to Services 20
Results 21
Descriptive Statistics and Important Correlations 21
General Access to Care 22
Number of Services 22
Total Cumulative Hours 22
Type of Services 22
Further Investigations of Access to Care 23
Disparities 23
Full Sample 23
Within Groups 26
Barriers to Services 28
Discussion 31
Research Question #1: General Access to Care 31
Research Question #2: Racial and Socioeconomic Disparities 33
Research Question #3: Barriers to Services 35
Implications for Education and Concluding Thoughts 36
Limitations 40
Research Questions #1 and #2 40
Research Question #3 42
Future Research 42
Appendices 44
Appendix A: Diagnostic Criteria for Autism Spectrum Disorder 44
Appendix B: Emory Internal Review Board Approval 48
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