IES Blog

Institute of Education Sciences

Family Access to Knowledge of their Rights in Transition and Guardianship for Students with Disabilities

The Individuals with Disabilities Education Act (IDEA), first enacted in 2004, specifies how public agencies should provide early intervention, special education, and related services to children with disabilities and delineates the rights of families to participate in meetings in which decisions are made on the evaluation, identification, and educational placement of their children. However, students with disabilities transition out of IDEA coverage when they graduate high school or reach age 21. This is a particularly crucial moment for students with intellectual and developmental disabilities (IDD).

Under IDEA, parental decision-making rights transfer to students at age 18 unless parents seek further guardianship. This complex issue requires understanding of the options and what they mean for the student. Alleviating any knowledge gaps is important for better transition outcomes for secondary students. In 2020, the U.S. Department of Education released an updated transition guide, A Transition Guide to Postsecondary Education and Employment for Students and Youth with Disabilities, for high school educators to better equip students on their transition into postsecondary education. The Department also released a brief to better inform students about their rights and the overall transition process as they prepare for postsecondary education and employment.

Allison Hall at the University of Massachusetts, Boston and her research team are exploring the role of special educators in informing youth and parents about transfer of rights and guardianship and its implications for transition outcomes for students with IDD. The project began with a review of the literature, a document review of state-level policies, and interviews with experts in the field of transition for students with IDD. These three initial research activities were followed by interviews with students, parents, and special educators on their experience during discussions of the transition process. We asked her to update us on the project and what they’ve learned so far. (Responses have been edited for brevity and clarity.)

NCSER: Please provide an update of where you are with the project.

Headshot of Allison Hall

Hall: Project staff members recently completed interviews in triads—which included a special educator, parent, and student with IDD—

focused on conversations about the transfer of rights and transition planning process for students after turning 18 through videoconferencing with participants from New York and Massachusetts. The research team, including researchers from Massachusetts Advocates Standing Strong and the Self Advocacy Association of New York State, is now analyzing the data for common themes. Once analyzed, the team will produce briefs and a short video highlighting key findings from the research.

Findings from qualitative data collection with experts in transfer-of-rights and transition planning yielded important information about the factors that influence how the transfer-of-rights conversations happen in special education settings:

  • School-based professionals have limited capacity and knowledge about the long-term impacts of guardianship
  • Schools are operating under an outdated paradigm of ableism—the tendency to intentionally or unintentionally presume incompetence as it relates to decision making for students with IDD
  • There is limited/lack of student engagement in transition planning and decision making
  • Schools are frequently guided by inadequate district and state policies

NCSER: Could you share any resources that may be useful to policymakers or parents?

Hall: Resources on our Institute for Community Inclusion website include an interactive map that describes the transfer-of-rights policies and laws in each state; plain language briefs for students about turning 18, transfer of rights, and alternatives to guardianship; and a brief that supports parents taking advantage of the transfer-of-rights process to position their youth with IDD for better transition outcomes.

NCSER looks forward to seeing the final results of Dr. Hall’s study on understanding how educators provide transfer-of-rights and guardianship information to families and the ways in which this information impacts parent expectations and student self-determination, each of which impacts student outcomes. Findings from this study can inform a future school-based intervention that tests strategies for more robustly incorporating transfer-of-rights discussions into the student-led transition planning process.

This blog was produced by Alysa Conway, NCSER student volunteer and University of Maryland, College Park graduate student with substantive contributions from NCSER program officers Akilah Nelson, Katie Taylor, and Amy Sussman.