Exploring Access and Barriers to Intervention Services for Children with Autism in the State of Georgia Open Access

Simon, Andrea Renee (2015)

Permanent URL: https://etd.library.emory.edu/concern/etds/zc77sq762?locale=en


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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