Feature Issue on Inclusive Higher Education for People with Intellectual, Developmental, and Other Disabilities
Navigating Guardianship and Supported Decision-Making in Higher Education
A recent increase in scholarship, advocacy, and media attention in the United States has led to increased interest in matters related to guardianship and supported decision-making (SDM) for people with disabilities. These are especially critical issues for higher education programs supporting young adults with intellectual and developmental disabilities (IDD) as they prepare for careers and life in their communities. Despite their variability in geography, size, and curriculum, these programs share some common beliefs. As Norman Kunc reminded us, “how we act is determined by what we believe” (2000), and our belief in inclusion, dignity of risk, and self-determination should be well-understood cornerstones of college programs supporting students with IDD.
The decision to use institutions of higher education (IHE) to support students with IDD has been driven, at least in part, by a shared value of promoting inclusion. If people are to be fully included in their communities across their lifespan, the supports provided to prepare them for those opportunities must be provided within settings that resemble those integrated communities. The benefits and philosophy of inclusion, in large part, drive college programs for students with IDD as “both a moral and practical imperative” (Uditsky & Hughson, 2012).
Dignity of Risk
In his pioneering work on the concept of the dignity of risk, Robert Perske sets the stage by discussing the tendency of professionals supporting people with disabilities to be “overzealous in their attempts to ‘protect,’ ‘comfort,’ ‘keep safe,’ ‘take care,’ and ‘watch’” (1972). This overprotection, Perske argues, is a threat to one’s human dignity in the way it keeps a person from the risk that is an essential aspect of their growth and development. As professionals supporting students with IDD in higher education, we are called to embrace the messiness of inclusion that offers real-life risks alongside real-life rewards (Bumble et al., 2021).
While self-determination is the term typically associated with the behaviors people engage in to direct their lives, a critical dimension of self-determination lies in its reference to the right to direct one’s own life (Wehmeyer, 1997). As inclusive higher education professionals, we recognize and value the potential of college settings for providing students with IDD opportunities to meaningfully self-direct their lives in a supportive environment. The ideal of agency drives the policy, culture, and day-to-day practice of programs. The value we place on students mastering self-determination skills and living with autonomy, in turn, shape the way we approach issues related to guardianship for adult students with IDD and alternative options for decision-making support.
Practical Implications of Our Values
Guardianship for adults with IDD is implemented as a result of a judge’s ruling that a person is incapable of making or communicating responsible decisions, necessitating a surrogate decision-maker. Evidence abounds, however, to suggest that guardianship is often undue, overly restrictive, and used without consideration of support alternatives. Alternatives such as SDM offer structured mechanisms for adults with IDD to receive the support they need to handle the responsibilities of adulthood without impeding inclusion, dignity of risk, or self-determination.
There are two general positions that we have anecdotally observed programs taking in reference to guardianship that may not be conducive to our values or to effectively advocating on matters related to guardianship for people with IDD. At one extreme, we have observed programs deny access for prospective students under guardianship. Students are denied participation in some programs, likely because the philosophy of encouraging independence in decision-making is at odds with the rationale behind the original pursuit of guardianship. They may feel that students under guardianship arrangements could not reasonably operate in an environment where large and small decisions must be made in the moment.
Guardianship... should be addressed explicitly at the beginning of the college experience
At another extreme, we see programs that deem guardianship to be a private, family matter that should not involve program staff or administrators. Instead, staff may have students and families sign documents governing how and whether communication with guardians will occur in certain circumstances. They may also educate students and families on the implications of guardianship after college, and they may collect data to support and empower young adults with IDD to advocate for decision-making power in their lives. Without this support, how many students might live their lives under full guardianship without the opportunity to demonstrate their ability to make adult decisions?
Staff of inclusive higher education programs are aware of the influence they have over the orientation of students, parents, colleagues, and other stakeholders to disability issues. This position carries with it an important responsibility, especially at the intersection of issues that may mediate the civil rights, dignity, and autonomy of people with disabilities (Salzman, 2010). Professionals at the helm of inclusive higher education programs may choose to use their platforms to advocate for the use of less restrictive alternatives to guardianship, and this is consistent with the values of self-determination. They should not avoid discussing the matter, and as a field we should consider the scope of our advocacy as it relates to both skill-building and support.
Campus life ushers in a time when many adult decisions are made on a daily basis.
Skill-Building and Support
Learning on a college campus ushers in a shift of decision-making responsibilities from parent to student for many families. Whether an adult student is under guardianship orders or not, they are making decisions in the moment about many aspects of life, from figuring out what to do between classes to making decisions in personal and romantic relationships. Programs provide a supportive environment in which students explore, practice, and master the skill of decision-making. This support ranges from reflective peer feedback to one-on-one coaching and involves critical life skills such as personal healthcare decisions.
College programs have been providing decision-making supports to students with IDD since their inception. We may view our primary mission as supporting students in identifying and pursuing their goals after completing their inclusive higher education programs. Nevertheless, many programs have found it necessary to think holistically about supporting both students and families to practice and refine decision-making skills as a critical part of the higher education experience that will create a path to a more autonomous future. Parents often find it difficult to “let go” of their adult child with IDD and let the student experience agency in college, yet the independence gained as a result of attending an inclusive higher education program is a desired outcome of most parents (Miller et al., 2018). Program staff can support parents in building the skills to encourage student self-direction and decision-making through orientations, targeted workshops, and informal conversations as needed.
Topics such as guardianship and SDM should be addressed explicitly at the beginning of the college experience so that program staff, students, and parents are aware of how these mechanisms may affect decision-making in an IHE setting. This requires strong, supportive messaging from staff at each stage of the program. In the beginning, it establishes the program’s philosophy on student decision-making and the role of parents. Throughout the program, staff support is critical in evaluating supports and reinforcing student autonomy. And after two to four years of autonomous, community-based decision-making, a student should leave empowered to continue to direct their own future and the supports they want to help them get there. The degree to which they do so is greatly influenced by the ways in which college programs operationalize their values to advocate, build skills, and support students and their families.
Bumble, J. L., Worth, C. R., Athamanah, L. S., Rooney-Kron, M., Regester, A., & Lidgus, J. (2021). “Messy Inclusion”: A Call for Dignity of Risk in Inclusive Postsecondary Education. Inclusive Practices, https://doi.org/10.1177%2F27324745211050023.
Kunc, N. (2000). Integration: Being realistic isn't realistic. Electronic Journal for Inclusive Education, 1(3), 2.
Miller, K. D., Schleien, S. J., White, A. L., & Harrington, L. (2018). Letting Go: Parent perspectives on the outcomes of an inclusive postsecondary education experience for students with developmental disabilities. Journal of Postsecondary Education and Disability, 31(3), 267-285.
Salzman, L. (2010). Rethinking guardianship (again): Substituted decision making as a violation of the integration mandated of Title II of the Americans with Disabilities Act. University of Colorado Law Review, 81(1), 157-246.
Uditsky, B., & Hughson, E. (2012). Inclusive postsecondary education—An evidence-based moral imperative. Journal of Policy and Practice in Intellectual Disabilities, 9(4), 298-302.
Wehmeyer, M. (1997). Self-determination as an educational outcome: A definitional framework and implications for intervention. Journal of Developmental and Physical Disabilities, 9(3), 175-209.