Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services

Aubyn C Stahmer; Sarah Vejnoska; Suzannah Iadarola; Diondra Straiton; Francisco Rienosa Segovia; Paul Luelmo; Elizabeth H Morgan; Hyon Soo Lee; Asim Javed; Briana Bronstein; Samantha Hochheimer; EunMi Cho; Aritz Aranbarri; David Mandell; Elizabeth McGhee Hassrick; Tristram Smith; Connie Kasari

doi:10.1007/s40615-019-00575-y

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Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services

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Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services

Aubyn C Stahmer, Sarah Vejnoska, Suzannah Iadarola, Diondra Straiton, Francisco Rienosa Segovia, Paul Luelmo, Elizabeth H Morgan, Hyon Soo Lee, Asim Javed, Briana Bronstein, …

Journal of racial and ethnic health disparities, Vol.6(4), pp.752-773

08/2019

DOI: https://doi.org/10.1007/s40615-019-00575-y

Handle:

https://hdl.handle.net/20.500.12741/rep:6550

PMID: 30859514

Abstract

Cross-cultural

Service access

Parent perspectives

Autism spectrum disorder

Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.

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Title: Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services
Creators: Aubyn C Stahmer - Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA 95817, USA
Sarah Vejnoska - Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA 95817, USA
Suzannah Iadarola - Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY 14642, USA
Diondra Straiton - Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA 19104, USA
Francisco Rienosa Segovia - Department of Psychiatry, University of California, Los Angeles Graduate School of Education & Information Studies & Center for Autism Research & Treatment, UCLA Semel Institute 68-268, Los Angeles, CA 90024, USA
Paul Luelmo - Department of Psychiatry, University of California, Los Angeles Graduate School of Education & Information Studies & Center for Autism Research & Treatment, UCLA Semel Institute 68-268, Los Angeles, CA 90024, USA
Elizabeth H Morgan - Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA 95817, USA
Hyon Soo Lee - Department of Psychiatry, University of California, Los Angeles Graduate School of Education & Information Studies & Center for Autism Research & Treatment, UCLA Semel Institute 68-268, Los Angeles, CA 90024, USA
Asim Javed - Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY 14642, USA
Briana Bronstein - Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA 19104, USA
Samantha Hochheimer - Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY 14642, USA
EunMi Cho - College of Education, California State University, Sacramento, 6000 J St., Sacramento, CA 95819, USA
Aritz Aranbarri - Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA 95817, USA
David Mandell - Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA 19104, USA
Elizabeth McGhee Hassrick - A.J. Drexel Autism Institute, Drexel University, 3020 Market Street | Suite 560, Philadelphia, PA 19104, USA
Tristram Smith - Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY 14642, USA
Connie Kasari - Department of Psychiatry, University of California, Los Angeles Graduate School of Education & Information Studies & Center for Autism Research & Treatment, UCLA Semel Institute 68-268, Los Angeles, CA 90024, USA
Academic Unit: Teaching Credentials; Doctorate in Educational Leadership
Publication Details: 08/2019
Identifiers: 99257880106901671; https://hdl.handle.net/20.500.12741/rep:6550; https://doi.org/10.1007/s40615-019-00575-y
Language: English

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services

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