Purpose: The goal of this project is to explore whether and how the information special educators provide to parents about transfer of rights and guardianship may either support or limit students' transition outcomes for students with intellectual and developmental disabilities (IDD). Special education regulations state that parental decision-making rights will transfer to students at the age of 18 unless parents of students with IDD obtain guardianship over their children. During transition planning, special educators routinely encourage parents to seek guardianship despite the growing array of available formal and informal alternatives to guardianship such as supported decision making. Guardianship undermines a core aim of special education, namely promoting the self-determination of students with IDD. The possible effects of guardianship discussions on the transition outcomes of students with IDD have not been well researched. This research team will therefore examine the factors that affect how special educators provide information on transfer of rights and guardianship to parents and transition-age students with IDD, and the ways in which this information affects known predictors of transition outcomes, including parent expectations and student self-determination.

Project Activities: This project will begin with three initial research activities: a scoping review of the literature in a variety of fields including youth social and emotional development, education and special education, and legal research; a 50-state document review and analysis of state-level special education transfer-of-rights policies and guidance; and interviews with experts in the field of transition for students with IDD. Findings from these initial activities will inform the next set of activities: qualitative interviews with triads of transitioning students, their parents, and special educators on their IEP teams regarding their experiences participating in guardianship and transfer-of-rights discussions during the transition process; the development of a research-based theoretical model that informs the development of a future intervention regarding the transfer-of-rights process; and an expert panel that will review and recommend refinements to the model.

Products: The products of the project will include a description of current practice regarding transfer-of-rights and guardianship discussions and procedures, what influences those practices, including state and district policy, and the relationship between those practices and transition outcomes for students with IDD and their parents. The researchers will develop a theoretical model that can serve as a foundation for developing a future intervention that can systematically test how the transfer-of-rights process can be structured to best support positive transition outcomes. This project will also result in peer-reviewed publications and presentations as well as additional dissemination products that reach education stakeholders such as practitioners and policymakers.

Structured Abstract

Setting: This research takes place in school districts in Massachusetts and New York. State-level policy documents will be collected from all 50 states.

Sample: The target population for this study is transition-age youth with IDD (aged 18-22), parents of students with IDD, and special educators. A total of up to 15 experts, including researchers, special educators, students, parents, and attorneys, will participate in the expert interviews and expert panel review of the theoretical model. Twenty-four sets of triads (students, their parents, and special educator on their IEP team) will participate in the qualitative interviews.

Malleable Factors: The malleable factors under investigation are the domains of information regarding transfer of rights and guardianship provided—and the process for providing that information—to parents of students with IDD.

Research Design and Methods: This project consists of six research activities. The initial activities include a scoping review of published and unpublished literature from a wide variety of sources, including general purpose databases, search engines, journals, bibliographies, conference proceedings, books, and grey literature (papers, reports, and websites) in a variety of fields such as youth social and emotional development, education, and special education. In addition, the researchers will conduct a 50-state document review and analysis of state-level special education transfer-of-rights policies and guidance using a national database of state laws and regulations, as well as publicly available documents on state department of education websites. The final preliminary activity will be semi-structured interviews with experts in the field of transition for students with IDD to gather information regarding best practices in facilitating discussions of transfer of rights, and what factors influence the way IEP teams discuss this with parents. Findings from these initial activities will inform the last three research activities. The research team will conduct semi-structured interviews with triads of transitioning students, their parents, and special educators on their IEP teams regarding their experiences participating in guardianship and transfer-of-rights discussion during the transition process. They will also develop a research-based theoretical model that informs the development of a future intervention regarding the transfer-of-rights process, as well as convene an expert panel to review and recommend refinements to the model.

Control Condition: Due to the nature of the research design, there is no control condition.

Key Measures: District level policies, procedures, and protocol on transfer of decision-making rights discussions with special education students and parents will be measured through document review. The research team will conduct semi-structured interviews with special education transition staff to gather information on ways in which they discuss transfer of decision-making rights with students and parents/guardians (including supported decision-making, guardianship, and referral to other parties) and their perceptions of the influences shaping their delivery of information to students and parents on these issues. Researchers will also conduct semi-structured interviews with parents to measure the following: (a) the parent's recall of how the transfer of decision-making rights was discussed by the special education team, any referrals made, and the extent to which they were requested by parents; (b) the parent's postsecondary education and employment expectations/goals for the student before initiating the transition planning process and discussing transfer of decision-making rights as well as after this discussion and taking (or declining to take) action on the transfer of decision-making rights; (c) the extent to which the parent feels transfer of decision-making rights discussions and procedures influenced their postsecondary education and employment goals for the student; (d) parent action with respect to the student's decision-making rights (whether the parent-initiated a guardianship petition, sought to implement an alternative to guardianship, or took no action); and (e) any other influences on parent expectations offered by parents during interviews. Finally, semi-structured interviews with the students will gather the following information about their perspectives: (a) recall of discussion of transfer of decision-making rights by IEP team; (b) account of the impact of these discussions on self-concept and postsecondary education and employment goals; (c) understanding of their decision-making rights; (d) goals for postsecondary education and employment; (e) perception of parents' postsecondary education and employment goals for them and the extent to which they have influenced the student's perception of self and goals; and (f) any other reported influences on student self-determination.

Data Analytic Strategy: Data collected on the state policies will undergo content analysis followed by exploratory correlational analyses among state-level variables that describe transition outcomes. Data collected through qualitative interviews will be analyzed descriptively, using family grouping, coding, and data display to understand influences that shape how special educators deliver transfer-of-rights notification and guardianship information, and how these discussions affect parent expectations and student self-determination.