Abstract
Autistic adults in need of long-term services and supports spend months on waiting lists before receiving such services through Medicaid. Data from a state-wide survey of adults and their caregivers on a waiting list for autism waivers suggest that the majority have unmet needs for functional skills services (63.6%), employment or vocation services (62.1%), and mental and behavioral health services (52.8%). Almost a third require case management services (28.3%). Predictors of greater service need are African American race and the number of physical and behavioral health diagnoses. Predictors of greater service receipt were employment status, housing type, and school enrollment; there was lower service receipt for African American race, Hispanic ethnicity, over age 21 years, and college completion.
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Source: Authors’ analysis of PA Autism Interest List Needs Assessment, 2015
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Notes
We conducted t-tests of indicator variables and chi-squared tests of categorical variables to examine whether there were significant differences in responses by paper versus online survey responses (p < 0.05). In the adult survey, there were no significant differences in the variables of interest by whether the individual returned a paper or online survey, except that more males returned the survey online than females. For the caregiver survey, there were some significant differences, as caregivers with higher incomes, caregivers of adult children that were white, and caregivers of adult children living independently were more likely to return online surveys.
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Acknowledgments
The authors wish to thank the individuals and family members who completed the Needs Assessment survey. We also appreciate the invaluable assistance of Paul Turcotte and Kate Verstreate in presenting data graphically. Earlier versions of this work benefited from the comments of participants of the 2017 International Society for Autism Research annual meeting. This work was supported by funding from the Pennsylvania Bureau of Supports for Autism and Special Populations (BSASP), formerly known as the Bureau of Autism Services, within the Pennsylvania Department of Human Services, Office of Developmental Programs.
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Funding was provided for the Autism Services, Education, Resources, and Training Collaborative (ASERT) Collaborative Eastern Region by the Bureau of Supports for Autism and Special Populations, Pennsylvania Department of Human Services.
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All authors contributed to the study conception and design. Material preparation and data collection were performed under the guidance of Lindsay Shea, and statistical analyses were performed by Whitney Schott. The first draft of the manuscript was written by Whitney Schott and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Schott, W., Nonnemacher, S. & Shea, L. Service Use and Unmet Needs Among Adults with Autism Awaiting Home- and Community-Based Medicaid Services. J Autism Dev Disord 51, 1188–1200 (2021). https://doi.org/10.1007/s10803-020-04593-2
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DOI: https://doi.org/10.1007/s10803-020-04593-2