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      Caregivers’ perspectives on health-care transition in autism

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          Abstract

          Purpose

          Adults with autism spectrum disorder (ASD) experience significant health-care disparities across physical and mental health domains resulting in poorer health and quality of life. Poor transitions to adult care negatively impact the health of adults with ASD. Current research focuses on personal factors in research samples that lack diversity. The purpose of this study is to examine the lived health-care experiences of geographically and ethnically diverse young adults with ASD in adult care settings in the USA to understand provider and system-level factors affecting their health.

          Design/methodology/approach

          Nine caregivers of young adults with ASD participated in key informant interviews describing their experiences in navigating the health-care system. Data were analyzed using a grounded theory approach.

          Findings

          The data indicated that limited quantity of services, poor quality of services, and high cost of services had a negative effect on the health of adults with ASD. Issues cascaded to become more complex.

          Practical implications

          Practical implications for payors, providers, persons with ASD and their families are discussed in this paper.

          Originality/value

          To the best of the authors’ knowledge, this study answers the call to better understand system-level factors affecting the health of geographically and ethnically diverse people with ASD.

          Related collections

          Most cited references 20

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          The lifetime distribution of the incremental societal costs of autism.

           Michael Ganz (2007)
          To describe the age-specific and lifetime incremental societal costs of autism in the United States. Estimates of use and costs of direct medical and nonmedical care were obtained from a literature review and database analysis. A human capital approach was used to estimate lost productivity. These costs were projected across the life span, and discounted incremental age-specific costs were computed. United States. Hypothetical incident autism cohort born in 2000 and diagnosed in 2003. Discounted per capita incremental societal costs. The lifetime per capita incremental societal cost of autism is $3.2 million. Lost productivity and adult care are the largest components of costs. The distribution of costs over the life span varies by cost category. Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.
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            Cost Containment and the Tale of Care Coordination.

             J McWilliams (2016)
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              • Abstract: not found
              • Article: not found

              Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD)

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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                AIA
                Emerald Publishing
                2056-3868
                2056-3868
                27 February 2020
                : 6
                : 2
                : 153-164
                Affiliations
                Department of Occupational Therapy, Florida International University , Miami, Florida, USA
                Department of Medicine, Florida International University , Miami, Florida, USA
                Department of Occupational Therapy, Florida International University , Miami, Florida, USA
                Author notes
                Jaclyn K. Schwartz can be contacted at: jaclyn.schwartz@fiu.edu
                Article
                641260 AIA-07-2019-0022.pdf AIA-07-2019-0022
                10.1108/AIA-07-2019-0022
                © Emerald Publishing Limited
                Page count
                Figures: 1, Tables: 1, Equations: 0, References: 37, Pages: 1, Words: 6238
                Product
                Categories
                research-article, Research paper
                cat-HSC, Health & social care
                cat-LID, Learning & intellectual disabilities
                Custom metadata
                M
                Web-ready article package
                Yes
                Yes
                JOURNAL
                included

                Health & Social care

                Transition to adult care, Autism spectrum disorder

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