Perceptions of District- and School-Level Special Education Leaders on Guardianship and Adult Decision-Making Support

Abstract

There are many known barriers facing youth with disabilities as they make the transition from high school to their adult lives. One potential barrier receiving increased attention over the last 5 years is guardianship, the court petition-driven process by which adults with disabilities are declared incapacitated (i.e., unable to make or communicate decisions regarding their affairs). The result of this process is the appointment of a surrogate decision-maker known as a guardian. Depending on the nature of the court order, some rights like entering into contracts might transfer to the guardian, other rights may be retained by the “ward,” and other rights like marrying might be removed altogether. Guardianship has been framed as antithetical to the aims of the Individuals with Disabilities Education Act and contrary to research demonstrating the importance of self-determination for young adults with disabilities. Few studies, however, have examined the perspectives of professionals in special education leadership roles on issues related to special education, guardianship, self-determination, and alternatives to guardianship. This study surveyed professionals in district- and school-level special education leadership roles (N = 117) to examine their perspectives on what “should” be done and what is actually being done relative to issues surrounding guardianship in their district. Subsequent descriptive and inferential analyses show a stark incongruence between that which professionals value regarding this domain and the current reality of practice in their local areas. Salient findings with important implications for special education policy and future research are presented and discussed.

Keywords

transition self-determination law/legal issues developmental disabilities

Discussions of research and practice related to young adults with disabilities are often driven by the research reflecting their lacking postschool outcomes in employment, independent living, and matriculation in higher education (Mazzotti et al., 2016; Newman et al., 2011). Because of these well-documented, less-than-desirable ends, an increasing focus for scholarship on young adults with disabilities in the last decade has been placed on determining the correlates of positive postschool outcomes (Carter et al., 2012; Mazzotti et al., 2016; Test et al., 2009). One of these correlates, self-determination, is commonly understood in special education as the cluster of skills (e.g., problem-solving and self-advocacy) associated with the autonomous behavior (Wehmeyer, 1999). For students with disabilities approaching the age of majority, there may be concern or assumptions made about their ability to take on the rights and responsibilities of adulthood with autonomy (Lindsey et al., 2001).

Parents and communities at large are faced with the decision, explicitly or inexplicitly, of how they will attend to the real or perceived needs of those young adults with disabilities in terms of adult decision-making support. Nearly 20 years of research on the topic indicates that educators, disability service providers, families, and courts are biased toward attending to those support needs through unnecessarily restrictive mechanisms of substitute decision-making like guardianship (Burke, 2016; Jameson et al., 2015; Martinis & Gustin, 2017; Millar, 2003; Millar & Renzaglia, 2002; Payne-Christiansen & Sitlington, 2008; Salzman, 2010; Shogren et al., 2018; U.S. National Council on Disability, 2018). This bias, however, is out of sync with attempts to modernize adult decision-making support in ways that are better aligned ethically, philosophically, and pragmatically to best practice in secondary transition for young adults with disabilities (Arstein-Kerslake et al., 2017; Kanter, 2015; Millar, 2009, 2014a, 2014b; Payne-Christiansen & Sitlington, 2008; Rood et al., 2014; Shogren et al., 2018; Zhang et al., 2019).

Guardianship is broadly understood as the court petition-driven process whereby an adult with a disability is formally declared as incapacitated (i.e., unable to make responsible adult decisions) and set up as a ward of a court-appointed guardian (U.S. National Council on Disability, 2018). This declaration of incapacity and subsequent appointment of a guardian may include a transfer of rights to that guardian in matters like opening a bank account and signing a rental agreement for an apartment or rights that are removed completely in matters like marrying and voting (U.S. National Council on Disability, 2018). The rate of guardianship in certain subsets of the population of adults with disabilities, such as those with intellectual and developmental disability, has been shown to be as high in some U.S. states as 89% (Bradley et al., 2019). Between the years of 1995 and 2011, it is estimated that the rate of guardianship in the United States spiked from around half a million to 1.5 million (Uekert & Van Duizend, 2011). The best current estimates of U.S. citizens under guardianship range from 1.5 to 3 million (Glen, 2014). Moreover, although judges have the ability to limit guardianships, literature shows that more than 90% of guardianships are plenary, providing complete authority to the guardian (Teaster et al., 2007).

In the wake of new language related to the transfer of educational rights for adult students with Individualized Education Programs (IEPs) in the 1997 reauthorization of the Individuals with Disabilities Education Act, Lindsey et al. (2001) published a Council for Exceptional Children (CEC) position paper on the topic of intellectual disability and age of majority issues. This position paper describes concern that this new legislative language on the transfer of educational rights might “lead to a circumstance where parents and family members will feel compelled to obtain guardianship or other legal decision-making status over their son or daughter when they might not otherwise do so” (Lindsey et al., 2001, p. 13). The new language on age of majority in the Individuals With Disabilities Education Act (IDEA) Lindsey et al. provide commentary on will go on to be retained in the 2004 reauthorization of IDEA (U.S. Department of Education, 2007; see 34 CFR § 300.520). More than a warning, however, they provide an optimistic view of these changes and the promise should “states adopt a philosophy of supporting students to become more self-determined and to become meaningful participants in the planning process” (Lindsey et al., 2001, p. 13).

Ethical, legal, and research-based arguments of the incongruence of guardianship and the aim of special education have changed little since Lindsey et al. (2001) first detailed the potential promise and peril of the 1997 reauthorization of IDEA. Some have asserted that guardianship stands in direct opposition to the implicit and explicit mandates of IDEA and that less restrictive alternatives to guardianship demand the attention of educators and families alike (Kanter, 2015; Rood et al., 2014). Building on the work of Rood et al. (2014), Kanter (2015) sets out an expanded argument against guardianship for young adults with intellectual and developmental disabilities based on three contentions: (a) for those operating under the auspices of the IDEA, assumptions of incompetence are detrimental and in conflict with IDEA; (b) guardianship fails to offer the protection people assume that it will; and (c) guardianship impedes the development of self-determination. Furthermore, parents may be led into guardianship under the impression that it will be the only way their son or daughter will receive the services they need and stay safe after high school (Kanter, 2015).

Between 2002 and 2008, the work of Dorothy Millar provides some of the earliest empirical explorations of the intersection of guardianship and special education. For example, Millar and Renzaglia (2002) described an education system that was structured to unjustly support guardianship as a frontline, rather than a last resort, for supporting young adults with disabilities. More than an indictment, however, the authors pose a three-pronged charge to the courts and educators to reorient themselves to a new conceptualization of supporting the independence of young adults with disabilities: (a) build capacity to better provide information to families on less restrictive alternatives to guardianship; (b) provide access to a curriculum that maximizes postschool outcomes like self-determination and self-reliance; and (c) better educate professionals supporting young adults with disabilities to support meaningful adult outcomes and on the range of adult decision-making support options. Millar and Renzaglia (2002) provide what would go on to be the focal point of literature at the intersection of guardianship and special education for nearly 20 years to come: guardianship as a last resort and the imperative for educators to better support less restrictive alternatives. Although an IEP team does not have the authority to make judgments about one’s capacity for decision-making, there is a responsibility of the IEP team to attend to decision-making issues in the transition planning process with data from formal and informal transition assessments (Lindsey et al., 2001).

Currently, there appears to be a separation between the transition planning process and the planning related to adult decision-making support, and education professionals may be prone to make assumptions that guardianship is categorically necessary for certain groups of students (Payne-Christiansen & Sitlington, 2008). In 2007, Millar conducted a series of focus groups with young adults with disabilities (n = 13), their teachers and support staff (n = 17), and their parents (n = 11). Specifically, she sought to examine the perspectives and experiences of young adults with disabilities, both those under guardianship and those not under guardianship, the special education teachers currently supporting them, and their parents on issues related to guardianship. Common to all groups was a disconnect between an agreed-upon importance of student self-determination and the implications of guardianship. Furthermore, wherein guardianship had been recommended to parents, it had been recommended exclusively in student IEP meetings. Jameson et al.’s (2015) findings from a national survey of adults with disabilities and their parents (n = 2,051) sparked a conversation around the country on the topic with an emphasis on the role of special education. Of respondents with disabilities under guardianship and parents serving as guardians (n = 447) for whom guardianship had been recommended (n = 282), 173 (61.34%) identified school personnel as a referral source for guardianship.

Since 2015, there has been a surge in the number of guardianship-related publications. The majority of these works focused on better describing and justifying the use of less restrictive alternatives to guardianship, namely, Supported Decision-Making (SDM; Arstein-Kerslake et al., 2017; Blanck & Martinis, 2015; Burke, 2016; Campanella, 2015; Glen, 2019; Martinis & Gustin, 2017; Zhang et al., 2019). Blanck and Martinis (2015) describe SDM as people tapping in to the support of people they trust “to help them understand the situations and choices they face so they may make their own informed decisions” (p. 26). Rather than being complicated process, Blanck and Martinis characterize SDM as “how most adults make daily decisions . . . individuals seek advice, input, and information from knowledgeable friends, family, and professionals so they may make their own informed choices” (p. 25).

Unlike formal, highly prescriptive mechanisms for substitute decision-making like guardianship, there is no single way to exercise or implement SDM (Kohn et al., 2012; Salzman, 2010). SDM can be as informal as a person consulting a family member before making any financial decisions (Kohn et al., 2012) or formally built into state-recognized legal frameworks like a power of attorney (Carney, 2013; Kohn et al., 2012). Some U.S. states like Texas, the first to pass legislation recognizing and formalizing the process of SDM, use of SDM agreements that outline the supportive relationship(s) in which a person with a disability is engaging (Shogren et al., 2018; Zhang et al., 2019). Of fundamental importance to SDM is the manner in which it keeps the person at the center and in control of decisions that affect their lives (Blanck & Martinis, 2015; Campanella, 2015). Because of this, adults with disabilities retain their authority and autonomy over their decisions and the ways in which they receive support (Salzman, 2010). Ultimately, they are empowered to act as causal agents in their lives (Blanck & Martinis, 2015), learning about decisions large and small as they access new experiences (Campanella, 2015).

There is a growing awareness in the field of special education that families may be pursuing guardianship without understanding the availability or the function of less restrictive alternatives that affirm the importance of self-determination (e.g., SDM). Despite the depth of the work done to date on the topic that has contributed to that growing awareness, however, little has been done to explore the values, perceptions, roles, and experiences of special education professionals related to this domain of practice. In fact, aside from Millar’s (2014b) Guardianship Alternative Model, little has been done to systematically organize and address practical considerations for school and district leaders in special education. Some scholars (e.g., Millar, 2014a, 2014b; Shogren, Wehmeyer, Uyanik, et al., 2017) have taken on the mantle of producing practitioner and family friendly resources to further the use of SDM, but no published studies have explored the perceptions of special education administrators on the topic. Widespread adoption of SDM in special education policy and practice demands a more thorough understanding of existing barriers and potential catalysts to its support. There are many factors such as how various professionals, including leaders, view complex and delicate issues like guardianship. With the everchanging landscape of special education and secondary transition, District and school leaders face challenges that they may not have dealt with while serving in other school roles or anticipated in their preservice training programs. Furthermore, special education leaders comprised a large and diverse group of professionals that represent various positions at different levels (i.e., state, district, and school). In fact, these leaders are not always directors or administrators. It is important to understand how perspectives align or conflict. In addition, the challenges current leaders face may be quite different from those faced by leaders with more experience. Understanding challenges during leaders’ induction phase or their first 6 years may serve to inform the structure and curriculum of school leader preparation programs. The National Foundation of Educational Research (NFER) developed a framework of career stages for special education leaders and lead teachers that outlines the consolidation stage (years 5–7) as a stage where leaders have introduced most of their planned changes (Earley & Weindling, 2007). Thus, the purpose of the current study was to examine the perceptions of special education leadership at the district and school levels (special education directors, district-level special education coordinators, school-level transition specialists, etc.) on issues surrounding guardianship and alternatives to guardianship and what issues might influence perceptions. More specifically, this study focused on examining those perceptions in light of the respondents’ length of career in special education (i.e., less than 6 years in current position, more than 6 years in current position) and on what families, teachers, districts, and school leaders “should do” and “actually do” with regard to serving youth with the most intensive needs. The research questions examined in the current study include the following:

Research Question 1: What are special education leaders’ perceptions of what school and district leaders, special education teachers, and families “should do” alongside what they “actually do” when attending to issues related to guardianship and less restrictive means of adult decision-making support for students with disabilities?

Research Question 2: What is the influence of respondent role and years of leadership experience on special education leaders’ perceptions of what school and district leaders, special education teachers, and families “should do” alongside what they “actually do” when attending to issues related to guardianship and less restrictive means of adult decision-making support for students with disabilities?

Method

Procedures and Participants

A current directory of special education directors in South Carolina (n = 85) was obtained through a request to the SC Department of Education’s Office of Special Education Services. In September 2019, each director was sent a personalized email with (a) a request to participate in an online survey and (b) a request to send the survey link to any other district- or school-level staff serving in a leadership capacity to support youth with IEPs in transition.

The sample of the current study included 117 special education leaders, including 37 Special Education Directors (31.4%), 34 Special Education Coordinators (29.7%), 29 School-Level Transition Specialists (24.6%), and 17 District-Level Transition Specialists (14.4%), who work across rural (44.1%), urban (8.5%), and suburban (47.5%) settings. Overall, five of the special education leaders have a bachelor’s degree (4.2%), nine have a bachelor’s degree plus additional college credits or certificate(s) (7.6%), 18 had a master’s degree (15.3%), 63 had a master’s degree plus additional college credits or certificate(s) (53.4%), 12 had a doctoral degree (10.2%), four had a doctoral degree plus additional college credits or certificate(s) (3.4%), and seven had identified their training as “other” (5.9%). Of the 117 special education leaders, 16 had worked in special education for less than 5 years (13.6%), 14 between 5 and 10 years (11.9%), 20 between 11 and 15 years (16.9%), 22 between 16 and 20 years (18.6%), 29 between 21 and 25 years, and 17 more than 25 years (14.4%). In addition, 28 had worked in their current role for less than 2 years (23.7%), 47 between 2 and 5 years (39.8%), 19 between 6 and 10 years (16.1%), 15 between 11 and 15 years (12.7%), eight between 16 and 20 years (6.8%), and one for 21 years or more (.8%). Of the 117 special education leaders, 20 had received training in guardianship processes in the past 3 years (16.9%), 57 had received training in IDEA regulations regarding transfer or rights at age of majority (48.3%), 40 had received training in Adult Students with Disabilities Educational Rights Consent Act (33.9%), 35 had received training in SDM (29.7%), 54 had received training in self-determination for youth with disabilities (45.8%), 49 had received training in transition assessments relevant to adult decision-making (41.5%), and 28 had not received any training in the aforementioned areas in the past 3 years (23.7%).

Instrument

The survey instrument was developed by the researchers based on the literature. Two experts in the field of adult decision-making support were consulted and provided feedback on the survey, and edits were made based on their feedback. The instrument consisted of two sections: demographic items and perceptions of school leaders related to what “should be done” and “what is currently done” in four domain areas.

Demographic items

The first section includes seven items to collect demographic information. Specifically, questions related on the estimated number of students with IEPs, the number of high schools in the district, urbanicity of the district, respondent’s professional role, training background, level of experience, and access to training specific to issues related to guardianship, transfer of educational rights, and adult decision-making support.

Special Education Leaders Domain items

The Special Education Leaders Domain items include two parallel items (total of four items) that evaluate special education leaders’ perceptions of what special education leaders “should do” and what they (the special education leaders in the current sample) “actually do.” Example parallel items include the following “Special education leaders at the school and district-level should understand the process for obtaining guardianship and the implications for those declared incapacitated” and “I understand the process for obtaining guardianship and the implications for those declared incapacitated.” Response options range from strongly disagree (1) to strongly agree (4), where higher scores represent stronger perceptions of a particular item. While the current study evaluated item-level indicators, a Cronbach’s alpha for what special education leaders “should do” is .79, and .78 for what special education leaders “actually do.”

School District Domain items

The School District Domain items include two parallel items (total of four items) that evaluate special education leaders’ perceptions of what school districts “should do” and perceptions regarding what they “actually do.” Example parallel items include “School districts should have clear policies and procedures for implementing the Adult Students with Disabilities Educational Rights Consent Act” and “My school district has clear policies and procedures for implementing the Adult Students with Disabilities Educational Rights Consent Act.” Response options range from strongly disagree (1) to strongly agree (4), where higher scores represent stronger perceptions of a particular item. While the current study evaluated item-level indicators, a Cronbach’s alpha for what school districts “should do” is .81, and .66 for what school districts “actually do.”

Special Education Teachers Domain items

The Special Education Teachers Domain items include five parallel items (total of 10 items) that evaluate special education leaders’ perceptions of what special education teachers “should do” and perceptions regarding what they “actually do.” Example parallel items include “Special education teachers should understand guardianship and alternatives for adult decision-making support” and “Special education teachers in my district understand guardianship and alternatives for adult decision-making support.” Response options range from strongly disagree (1) to strongly agree (4), where higher scores represent stronger perceptions of a particular item. While the current study evaluated item-level indicators, a Cronbach’s alpha for what special education teachers “should do” is .76, and .85 for what special education teachers “actually do.”

Family Members Domain items

The Family Members Domain Items include three parallel items (total of six items) that evaluate special education leaders’ perceptions of what family members “should do,” as well as perceptions regarding what they “actually do.” Example parallel items include “Family members should fully understand the implications of guardianship before pursuing it for their loved ones” and “Family members of students with disabilities in my district fully understand the implications of guardianship before pursuing it for their loved ones.” Response options range from strongly disagree (1) to strongly agree (4), where higher scores represent stronger perceptions of a particular item. While the current study evaluated item-level indicators, a Cronbach’s alpha for what family members “should do” is .85, and .88 for what family members “actually do.”

Analytic approach

To establish years of experience and role affiliation, respondents were dichotomized into two separate groups by demographic descriptor. Specifically, groups were established to represent special education leaders who worked in their current role for less than 6 years and those who worked in their current role for 6 years or more. The 6-year cutoff point was chosen based on literature that discusses the stages of educational leadership (Earley & Weindling, 2007). Specifically, the framework of career stages was developed based on the National Foundation of Educational Research (NFER) longitudinal study of special education leaders and lead teachers. The consolidation stage (years 5–7) is discussed as a stage where leaders have introduced most of their planned changes; therefore, the 6-year cutoff attempted to split those novice and developing leaders and those considered to be seasoned. Role affiliation was established by categorizing special education leaders into school-level leaders and district-level leaders. Once the groups were established, descriptive statistic, by item-level indicator, were examined, including means and standard deviations by subgroup. Inferential statistics were examined through a series of analysis of variance (ANOVA) by item-level indicator, separated by domain, for both years of experience and role affiliation. Therefore, data are presented by domain and group affiliation. When comparisons were made between three or more groups, Bonferroni correction was used for post hoc analysis.

An a priori decision to examine each construct separately was made as the psychometrics of the instrument fell within the acceptable range. The justification for this approach was to specifically answer the research questions while eliminating possible confounds or noise associated with the inclusion of nonrelated constructs or accounting for constructs that were not associated with specific research questions or the examination of specific subgroups. Given the sample size, specific research questions, and the decision to evaluate each subgroup separately, we have elected to the current analytic approach because it provides a more sound interpretation of the data, without violating analytic assumptions.

Results

Descriptive Statistics

Means and standard deviations were calculated for each item separately for individuals who were affiliated within a given subgroup. All means and standard deviations are provided in Supplemental Table 1. The mean ranges across all items were 2.18 and 3.65. Of the five items that were ranked the lowest were two related to special education teachers in their respective district and three regarding family member understanding. Specifically, “special education teachers in my district understand guardianship and alternatives for adult decision-making support” and “special education teachers in my district help students and families to select the least restrictive means possible for supporting adult decision-making” at M = 2.30 and M = 2.40, respectively. Furthermore, the items asking participants to rank family member in this area were also low (e.g., family members of students with disabilities in my district fully understand the implications of guardianship before pursuing it for their loved ones).

In addition, worth note is the overall trend for items related to “should do” (i.e., >3.0) tends to be higher than items related to “actually do” (i.e., <3.0), regardless of subgroup affiliation. In addition to means and standard deviations, an initial step to evaluate the data structure was to examine item-level associations by subgroup. Given the total number of associations examined, two separate correlations were conducted that evaluated item-level indicators for years of experience and role affiliation. As expected, regardless of subgroup status or domain, a majority of the “should do” items were associated, a majority of the “actually do” items were associated, but very few “should do” items were associated with “actually do” items.

Special Education Leaders Domain

The four items (i.e., two items for “should do,” two items for “actually do”) were examined through separate ANOVAs by years of experience and role affiliation. There was no significant difference for the “should do” items for years of experience or role affiliation and no significant difference for the “actually do” items for role affiliation. However, special education leaders with more than 6 years of experience in their current role reported significantly higher understanding of the process for obtaining guardianship and the implications for those declared as “incapacitated” (M = 2.98, SD = 0.72) when compared with special education leaders with less than 6 years of experience, M = 2.60, SD = 0.68; F(1, 116) = 7.97, p < .01. In addition, special education leaders with more than 6 years of experience in their current role reported significantly higher familiarity with less restrictive means for supporting adult decision-making (M = 3.19, SD = 0.71) when compared with special education leaders with less than 6 years of experience, M = 2.72, SD = 0.69; F(1,116) = 12.33, p < .01; see Supplemental Table 2 for item-level analyses.

School District Domain

The four items (i.e., two items for “should do,” two items for “actually do”) were examined through separate ANOVAs by years of experience and role affiliation. There was no significant difference for the “should do” and “actually do” items for role affiliation. In addition, both “should do” and one “actually do” items resulted in nonsignificant findings for years of experience. However, special education leaders with more than 6 years of experience in their current role reported significantly higher perceptions regarding their school district having clear policies and procedures in place for how age of majority conversations should take place in IEP meetings and the way in which decision-making support options were discussed (M = 3.02, SD = 0.80) when compared with special education leaders with less than 6 years of experience, M = 2.69, SD = 0.72; F(1,117) = 5.32, p < .05; see Supplemental Table 3 for item-level analyses.

Special Education Teachers Domain

The 10 items (i.e., five items for “should do,” five items for “actually do”) were examined through separate ANOVAs by years of experience and role affiliation. There was no significant difference for the “should do” and “actually do” items for years of experience. In addition, all five items for “should do” and three of five items for “actually do” items resulted in nonsignificant findings for role affiliation. However, school leaders reported significantly higher perceptions of special education teachers in their district helping students and families to select least restrictive means possible for supporting adult decision-making (M = 2.79, SD = 0.74) when compared with district leaders, M = 2.40, SD = 0.65; F(1,116) = 7.04, p < .01. School leaders also reported significantly higher perceptions of special education teachers in their district taking the lead on family questions about the transfer of rights for students approaching adulthood (M = 2.82, SD = 0.70) when compared with district leaders, M = 0.240, SD = 0.74; F(1,116) = 7.35, p < .01; see Supplemental Table 4 for item-level analyses.

Family Members Domain

The six items (i.e., three items for “should do,” three items for “actually do”) were examined through separate ANOVAs by years of experience and role affiliation. There was no significant difference for the “should do” and “actually do” items for years of experience. In addition, all three items for “should do” and two of three “actually do” items resulted in nonsignificant findings for role affiliation. However, school leaders reported significantly higher perceptions of family members of students with disabilities in their district’s understanding of the implications of guardianship before pursuing it for their loved ones (M = 2.41, SD = 0.82) when compared with district leaders, M = 2.11, SD = 2.11; F(1,115) = 4.44, p < .05; see Supplemental Table 5 for item-level analyses.

Discussion

Summary of Findings

The current study aimed to explore the perceptions of special education leaders regarding how schools are approaching issues surrounding guardianship and supported decision-making for transition-age youth with disabilities. Findings gleaned from this study show that special education leaders at both the district and school level believe that more should be done than is actually being done. Specifically, we examined role affiliation (i.e., district vs. school based) and years working in current role (i.e., those who have worked for more or less than 6 years in their current position). There were no significant differences across these two groups across any of the “should do” items. However, there were some items that showed a significant difference for both role affiliation and years’ experience with some of the “actually do” items. The participants with more than 6 years in their current role perceive special education leaders as having a higher understanding (compared to those with less than 6 years) of the process for obtaining guardianship and the implications for those declared as “incapacitated” as well as being familiar with less restricted means for supporting adult decision-making. Furthermore, the leaders with more experience believe school districts have clear policies and procedures in place for how age of majority conversations should take place in IEP meetings and the way decision-making support options are discussed.

The only three items where significant differences were found was based on role affiliation. School leaders’ (opposed to district leaders’) beliefs were that (a) special education teachers in my district help students and families select least restrictive means possible for supporting adult decision-making and (b) special education teachers in my district take the lead on family questions about transfer of right for students approaching adulthood. Also, one item in the family members domain showed a significant difference between school- and district-level leaders: family members of students with disabilities in their district understanding of the implications of guardianship before pursuing it for their loved ones.

The findings of this study support the need for teachers and other special education professionals to be equipped to support families navigating issues related to adult decision-making. More training and resource allocation in this area would likely support efforts. Interestingly, there were some differences across groups based on years’ experience and their role in the school/district. There are many examples that support the importance of role and years’ experience throughout the literature regarding education and service delivery (e.g., Plotner et al., 2017). However, there has yet to be a study that explores such characteristics and issues surrounding guardianship. Thus, understanding reasons why those professionals in various roles have different perceptions is important. For example, why district and school leaders have different perceptions of families understanding of the implications of guardianship deserves further investigation. Generally, the fact that all participants agree that more should be done than is actually being done and feel strongly that more should be done regardless of role and years’ experience are also interesting findings.

Limitations

There are limitations to this study that should be noted. The demographics of the present study pose a limitation regarding generalizability. The sample for this study was limited to one state and it is unknown whether findings are generalizable to other regions or states within the United States. Although the participating state has state initiatives promoting alternatives to guardianship as well as state-level secondary transition initiatives promoting interagency collaboration and teaming, it is unknown how representative the current state is of other states. Furthermore, this study is also limited in that it includes perceptions of the identified leaders; therefore, there could be bias in that they believe that what is “actually done” is on par with what is currently done; however, other stakeholders could feel differently. Furthermore, given the limited sample size, specific research questions, and study hypotheses, each subgroup was evaluated separately. This could present a potential limitation because the analytic approach did not account for potential subgroup differences. Therefore, future analyses should attempt to secure larger sample sizes to assess potential differences.

Practical Implications

It is important to equip teachers and professionals to understand SDM and the range of less restrictive alternatives to guardianship. A great deal of work in recent years has gone into clarifying and legitimizing SDM processes in particular. Blanck and Martinis (2015) self-published a handbook on the topic, focusing on practical resources for families and practitioners. Shogren, Wehmeyer, Martinis, et al. (2017) developed three SDM-based assessments known as the Supported Decision-Making Inventory System. In 2019, Shogren et al. published the first textbook on SDM, offering in-depth descriptions of SDM’s theoretical underpinnings, research to date, and practitioner-friendly resources. Despite the work done to elucidate the practice of SDM, it has not gone without words of caution, at times from the very scholars producing work on the practice. These warnings about rushing into broad support for SDM are based on the lack of empirical evidence supporting it or the potential for people with disabilities to be unduly influenced by their supporters (Arstein-Kerslake et al., 2017; Bigby et al., 2019; Kohn & Blumenthal, 2014; Kohn et al., 2012; Shogren & Wehmeyer, 2015; Zhang et al., 2019). This former charge, the lack of research supporting and protecting the integrity of SDM processes, persists today. While many cast this gap in the literature in a negative light, Shogren and Wehmeyer (2015) characterize it as (p. 5):

an opportunity . . . to think broadly about SDM and a framework for research and intervention that addresses the diverse ways that SDM can be supported, with a particular emphasis on how SDM can be understood and supported within the context of supports planning and a social-ecological model of disability.

If the last 20 years of literature on the intersection of guardianship, less restrictive alternatives, and special education has clearly demonstrated anything, it is the continued need for research, policy, and practice that respects the autonomy and dignity of youth and young adults with disabilities.

In 2013, Millar published an article arguing guardianship as a threat to the self-determination of adults with intellectual disability, detailing the guardianship process and research on the topic to date, and providing a list and descriptions of alternatives to guardianship. This could be beneficial for all special education leaders to understand. ATG are characterized in the following manner:

A family member, friend, or neighbor could assist with explaining potential benefits and risks when making a particular decision with regard to cooking, hygiene, health care, safety, relationships, money issues, and other everyday living areas. (Millar, 2013, p. 298)

In her subsequent descriptions of ATG, however, Millar provides exemplar scenarios that go past one simply having a formal or informal support network for making decisions. Although not explicitly brought forth in this manner, she outlines four ways in which supporting family members, friends, trusted advisors, and supporting professionals can help a person with an intellectual disability utilize ATG: (a) offering consultation for a decision (e.g., weighing the pros and cons of a specific decision), (b) helping to increase capacity for specific decisions (e.g., providing training on the function of a bank account), (c) facilitating the implementation of formal supportive actions (e.g., power of attorney or advanced directives), and (d) providing services that bolster independence (e.g., a home health aide providing prompts for activities of daily living). In short, Millar calls for comprehensive, person-centered support where “student autonomy and self-determination stay at the forefront” (p. 302).

To this end, Millar (2014a) offered a tool called the Guardianship Alternative Assessment Template (GAAT). Designed to be used as a transition assessment and guardianship prevention tool in the IEP process, the GAAT gathers information related to a student’s “vision, values and preferences; daily living functioning; cognitive functioning; risk of harm and least restrictive guardianship alternatives; and opportunities to enhance capacity” (p. 172). It supports, she asserts, a call for educators to ensure that objective data are driving age of majority conversations in the same way in which IDEA mandates they drive transition planning.

Complementing this tool, Millar (2014b) published an article on the Guardianship Alternative Model (GAM). The intent of the GAM is to foster an increase in purposeful transition planning in the IEP process “such that it addresses guardianship alternatives specific to students who have an intellectual disability and who may be at risk of losing all or some civil and legal rights when their competence and capacity to make decisions are questioned” (p. 453). The model focuses on five areas of professional practice supported by research as collective correlates of student autonomy and quality of life: “self-determination; assessment and planning; education and instruction; coordination and collaboration; [and] policy and process evaluation” (p. 455).

Policy Implications

Despite the vision Millar offers of IEP teams supporting ATG by using tools like the GAAT and the GAM, the current study reveals major gap between research and practice. A finding of the current study with implications for school district policy was respondents with 6 or more years of experience in special education being more inclined to affirm the presence of policies related to age of majority-related conversations. Although further investigation is needed to understand the cause of this phenomenon, one explanation could simply be a lacking awareness of existing district policies from less seasoned professionals. Should district-level policies exist related to this area of practice, explicit training on them and related procedures is something worth the consideration of special education administrators. It is issues such as this that have some scholars asserting the need for SDM to be explicitly addressed through an amendment to the IDEA that systematizes compliance on this front (Raley et al., 2020).

One area explored in the current study was the IDEA special rule related to state-recognized systems for the delegation of educational decision-making authority for adult students still receiving special education supports and services (see 34 CFR § 300.520(b); 20 USC §1415 (m)(2)). In South Carolina, this special rule was finally addressed by state statue with the Adult Students with Disabilities Educational Rights Consent Act (see S.C. Code § 59-33-310 to 59-33-370). This statute provides both a process for students to delegate their decision-making authority in the IEP process or, through examination by a licensed medical professional not employed by the school, determined to not have capacity to communicate on their own behalf regarding their IEP. In this latter case, the statute provides a prioritized list of surrogate decision-makers. Although this special rule was first brought forth in the IDEA in 1997 (Lindsey et al., 2001), it was not recognized by law in South Carolina until two decades later. Forty respondents in the current study (33.9%) indicated they had been trained on the law since its inception. Moreover, despite a major renovation of the South Carolina guardianship statute that went into effect in January 2019 (see S.C. Code § 65-5-304), only 20 respondents in the current study (16.9%) indicated they had been trained on guardianship in the last 3 years.

For educational professionals to support alternatives to guardianship like SDM, district policy should reflect more than just IDEA compliance with IDEA regulations. Policy training that remains current as the legal landscape of these issues change is essential. Without it, it is likely that education professionals at the district and local level are operating on outdated or inaccurate information.

Future Research Directions

The chiefly exploratory studies conducted over the last two decades serve to further our understanding of the role of special education in family decisions to pursue guardianship or forgo guardianship. Moreover, they provide useful context for the ways in which these decisions may or may not affect the educational experiences of young adults with disabilities. In short, they do well to collectively illustrate a few major issues: (a) There is, in some cases, undue influence from educators for families to consider guardianship as their young adult children approach the age of majority; (b) there is likely not enough support to families and students for the consideration of less restrictive alternatives for adult decision-making support; (c) this above-described disconnect exists potentially at the peril of young adults with disabilities and denies the well-established importance of self-determination; and (d) this domain of practice necessitates further research and practitioner support.

This current study, while a potentially important contribution to the exploration of the intersection of special education, guardianship, and adult decision-making support, underscores a number of pressing avenues for ongoing research. Despite claims about SDM alignment with self-determination and quality of life, there have been no quantitative studies comparing the self-determination or quality of life of those using SDM with those supported through more restrictive means like guardianship. Along with establishing and evaluating SDM as a supportive intervention, this type of research is essential if SDM and other alternatives to guardianship are to be adopted and supported in policy and practice.

The need for scaling up and replicating past research efforts is pressing. Secondary analyses and other types of studies that attempt to describe and quantify the rate in which courts are awarding guardianship (Bradley et al., 2019; Millar, 2003; Millar & Renzaglia, 2003; Teaster et al., 2007; Uekert & Van Duizend, 2011) are highly important. By and large, there is a sense that the rate of guardianship is a known problem, but largely lacking are the mechanisms by which communities and states can assess the scope of that problem over time. Furthermore, popular conjecture about guardianship isolates the issue in certain subsets of the disability community (i.e., intellectual and developmental disabilities). These biases thwart an understanding of the true nature and scope of the issue as it relates to personal and environmental factors.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Charles B. Walters

Supplemental Material

Supplementary material for this article is available on the Journal of Disability Policy Studies website at .

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