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Factors Associated with Transition Planning in Autism and Other Developmental Disabilities

Abstract

Objective

To determine whether functional self-care skills and presence of behavior problems in youth with developmental disabilities are associated with parents planning for the youth’s transition to adulthood.

Methods

This multi-site study consisted of 167 parents of youth aged 10–22 years with autism spectrum disorder, ADHD and/or other developmental disabilities who completed a questionnaire on transition to adulthood. Parent-rated child self-care status was measured using a six-item scale that had excellent reliability (Cronbach’s alpha=0.90).

Results

Multivariable logistic regression models revealed that parents were less likely to plan for the youth’s transition to adulthood if their child needed more assistance with functional self-care skills (OR 0.78, 95% CI 0.63–0.96, p=.021). Despite this unexpected finding, greater child need for assistance with self-care was associated with lower parental expectations that their children would live independently by age 22 (OR 0.40, 95%CI 0.24–0.66, p<.001) and 35 (OR 0.47, 95%CI 0.35–0.63, p<.001). The presence of behavioral problems (aggression, sexual behaviors and safety issues) was also associated with lower odds of parental expectations that their child would live independently in adulthood.

Conclusions

Despite this unexpected finding, greater child need for assistance with self-care was associated with lower parental expectations that their children would live independently by age 22 (OR 0.40, 95%CI 0.24–0.66, p<.001) and 35 (OR 0.47, 95%CI 0.35–0.63, p<.001). The presence of behavioral problems (aggression, sexual behaviors and safety issues) was also associated with lower odds of parental expectations that their child would live independently in adulthood. Despite parents’ awareness of the difficulties their children will face, less youth independence with self-care skills was associated with lower odds of plans for transition to adulthood and expectations for independent living. Results support the need for continued interventions targeted at improving daily living skills to achieve functional independence in adulthood, as well as interventions focused on aggression, safety and sexuality of the individuals.

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Data Availability

The authors confirm that the data supporting the findings of this study are available within the article. Raw data can also be obtained from the author upon reasonable request.

Abbreviations

ASD:

Autism Spectrum Disorder

ADHD:

Attention Deficit Hyperactivity Disorder

YSHCN:

Youth with Special Health Care Needs

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Acknowledgements

This study was partially funded by the MEDTAPP Healthcare Access (HCA) Initiative and utilized federal financial participation funds through the Ohio Department of Medicaid. The MEDTAPP HCA Initiative partners with Ohio’s colleges and universities to support the development and retention of additional healthcare providers to better serve the Ohio Medicaid population using emerging, interdisciplinary, and evidence-based care models. Views stated in this manuscript are those of the researchers only and are not attributed to the study sponsors, the Ohio Department of Medicaid or to the Federal Medicaid Program. The authors would also like to acknowledge the Clinical and Translational Science Award (CTSC) UL1TR 000439 for use of the REDCap software. Lastly, the authors acknowledge the support of the University of Maryland, Baltimore, Institute for Clinical & Translational Research (ICTR).

Financial Disclosures

The authors have no financial relationships relevant to this article to disclose.

Funding

This study was partially funded by the MEDTAPP Healthcare Access (HCA) Initiative and utilized federal financial participation funds through the Ohio Department of Medicaid.

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Authors

Contributions

Dr. Reyes conceptualized and designed the study, designed the data collection instrument, drafted the initial manuscript and approved the final manuscript as submitted.

Dr. Perzynski participated in the design of the study and data collection instrument, carried out the data analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Dr. Taylor participated in the design of the study and data collection instrument, assisted in the initial analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Dr. Kralovic, Dr. Wexberg and Dr. Frazier participated in the design of the study and data collection instrument, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Dr. Zhu participated in the data analysis, reviewed and revised the manuscript, and approved the final manuscript as submitted.

Dr. Roizen participated in the design of the study and data collection instrument, drafted the initial manuscript and approved the final manuscript as submitted.

Corresponding author

Correspondence to Charina Reyes.

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Conflict of Interest

Dr. Frazier has received federal funding or research support from, acted as a consultant to, received travel support from, and/or received a speaker’s honorarium from the Cole Family Research Fund, Simons Foundation, Ingalls Foundation, Forest Laboratories, Ecoeos, IntegraGen, Kugona LLC, Shire Development, Bristol-Myers Squibb, National Institutes of Health, and the Brain and Behavior Research Foundation. Dr. Perzynski reports an equity interest in Global Health Metrics and book royalty agreements with Springer Nature and Taylor Francis. The other authors have indicated they have no potential conflicts of interest to disclose.

Ethics Approval and Consent to Participate

This study was approved by the Institutional Review Boards at University Hospitals and the Cleveland Clinic and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Consent to particiate was obtained from the participants completing the survey instrument.

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Reyes, C., Perzynski, A., Kralovic, S. et al. Factors Associated with Transition Planning in Autism and Other Developmental Disabilities. J Dev Phys Disabil (2021). https://doi.org/10.1007/s10882-020-09785-3

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Keywords

  • Transition to adulthood
  • Developmental disabilities
  • Parental perspectives