Underserved and Undermeasured: a Mixed-Method Analysis of Family-Centered Care and Care Coordination for Low-Income Minority Families of Children with Autism Spectrum Disorder

2021 ◽  
Author(s):  
Stephanie Wagner ◽  
I. Leslie Rubin ◽  
Jennifer S. Singh
Keyword(s):  
Autism Spectrum Disorder ◽  
Care Coordination ◽  
Low Income ◽  
Mixed Method ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Centered Care ◽  
Family Centered ◽  
Method Analysis

Interdisciplinary Assessment of Young Children With Autism Spectrum Disorder

2003 ◽  
Vol 34 (3) ◽  
pp. 194-202 ◽  
Author(s):  
Patricia A. Prelock ◽  
Jean Beatson ◽  
Brooke Bitner ◽  
Carri Broder ◽  
Amy Ducker
Keyword(s):  
Autism Spectrum Disorder ◽  
Positive Impact ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Assessment Model ◽  
Assessment Process ◽  
Centered Care ◽  
Writing Community ◽  
Family Centered

This paper describes an interdisciplinary model for the assessment of children with autism spectrum disorder (ASD) that includes families as active participants and collaborators in the process. Family-centered care, cultural competence, and a strengths perspective provide the theoretical foundation for the assessment model. Steps in the assessment process include assignment of an assessment coordinator, intake, preassessment planning, community-based assessment, postassessment planning, report writing, community follow-up, and resource notebook development. Preliminary research examining the effectiveness of the assessment model reveals the positive impact of family-centered, culturally competent, and strengths-based service provision (Beatson & Prelock, 2002). The model has implications for school-based practitioners in increasing the role of families in the assessment of children with ASD.

Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial

Autism ◽  
2020 ◽  
pp. 136236132097417
Author(s):  
Carolyn DiGuiseppi ◽  
Steven A Rosenberg ◽  
Margaret A Tomcho ◽  
Kathryn Colborn ◽  
Kristina Hightshoe ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Young Children ◽  
Low Income ◽  
Early Identification ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Young Children With Autism ◽  
Low Income Families ◽  
To Receive

The Screening and Linkage to Services for Autism pragmatic trial examined the effect of family navigation on referral and evaluation for autism spectrum disorder in an urban healthcare system serving low-income families. Children aged 16–30 months with initial scores ⩾3 on the Modified Checklist for Autism in Toddlers–Revised with Follow-up (M-CHAT-R/F) were randomized to usual care ( n = 133) or navigation if indicated ( n = 142). Bilingual, bicultural autism family navigators offered navigation to intervention-group families if the completed M-CHAT-R/F indicated the need for autism spectrum disorder diagnostic evaluation. Autism family navigators also assisted families to arrange for completion of the M-CHAT-R/F interview if not done, and then offered navigation if indicated. Of 49 families for whom navigation was indicated, 45% received navigation, including care coordination, education, and practical support. In intention-to-treat analyses, the intervention did not increase referrals for evaluation but more than doubled completed autism spectrum disorder diagnostic evaluations. Intervention children were also more likely to complete the M-CHAT-R/F interview with fidelity. Research is needed to identify effective methods to improve uptake of family navigation. Family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder ( ClinicalTrials.gov , https://clinicaltrials.gov/ ; NCT02374541). Lay abstract Young children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder’s effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test “real-world” implementation of family navigation. We randomly assigned 275 children aged 16–30 months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families’ access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder.

A preliminary study of care coordination services within a specialized outpatient setting for youth with autism spectrum disorder

2019 ◽  
Vol 22 (3-4) ◽  
pp. 109-116 ◽  
Author(s):  
Vini Singh ◽  
Melanie Pinkett-Davis ◽  
Luther G. Kalb ◽  
Gazi Azad ◽  
Jason Neely ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Care Coordination ◽  
Unmet Need ◽  
Children With Autism ◽  
The United States ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Need For Care ◽  
Structured Care ◽  
Behavioral Services

Introduction Parents of children with autism spectrum disorder often experience high levels of stress and challenges when organizing medical and behavioral services for their child. Care coordination could alleviate these challenges, however little is known about the effectiveness of this service. This study examined the need, feasibility, and acceptability of a care coordination program. Methods Families of 176 children with autism, seen at a multidisciplinary autism clinic in the United States, participated in a prospective observational study. Families received a three-month structured care coordination program and completed pre- and post-program questionnaires that probed parents’ beliefs about the need and acceptability of the program through structured and open-ended questions. Results Most (≥90%) parents reported both a need for care coordination and satisfaction with the program. Qualitative themes identified valuable aspects and ways to improve the program. Discussion Parents raising a child with autism spectrum disorder experience an unmet need for care coordination. When provided, parents’ demonstrated high uptake of service and high levels of satisfaction with the program.

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