Date of Award

Spring 2021

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Crystal R. Hill- Chapman

Abstract

Purpose: This exploratory study aimed to assess the knowledge of school psychologists and special education teachers regarding genetic conditions and the resources used in the development of individualized education programs (IEP) for students with genetic disorders. While the IEP process has been described for children with disabilities, literature explicitly focusing on children with genetic conditions is lacking. The rarity of genetic conditions often leaves school personnel with limited information. Methods: School psychologists (N=29) and special education teachers (N =14) throughout the United States participated in an online questionnaire. School psychologists were recruited from research committee listservs of state associations, and special education teachers were identified through the Council for Exceptional Children. The questionnaire included demographic questions, Likert-scale questions regarding perceptions, and open-ended responses. The questionnaire assessed current practices of school psychologists and special education teachers when developing and implementing IEPs for students with genetic conditions. Results: Overall, school psychologists and special education teachers felt that they had an adequate understanding of the services and expectations, as well as adequate knowledge to discuss IEP objectives about a genetic condition diagnosed in a child. Participants felt that additional information regarding the impact of symptoms on educational abilities, diagnosis, and future associated concerns could help set more realistic goals for students with genetic conditions. Providing information early in the IEP process (early childhood, at time of diagnosis, during background preparation, and during evaluations of IEPs) would be most beneficial. Conclusions: These results suggest a desire for more information by the IEP team regarding genetic conditions. The participants reported that specific genetic information and the timing of the information would improve the development and implementation of IEPs for children with genetic conditions. While respondents identified little professional experience with a genetic counselor, they recognized that the role of a genetic counselor included expertise in the education of genetic information, as well as the counseling and support of patients and families. Collaboration with a genetic counselor could enhance the knowledge of IEP team members to improve decision-making during the IEP process for children with genetic conditions and identify additional resources available for team members.

Rights

© 2021, Naomi Jean Barker

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