Supported decision making has received increased attention as an alternative to guardianship and a means to enable people with intellectual and developmental disabilities to exercise their right to legal capacity. Assessments are needed that can used by people with disabilities and their systems of supports to identify and plan for needed supports to enable decision making. This article describes the steps taken to develop such an assessment tool, the Supported Decision Making Inventory System (SDMIS), and initial feedback received from self-advocates with intellectual disability. The three sections of the SDMIS (Supported Decision Making Personal Factors Inventory, Supported Decision Making Environmental Demands Inventory, and Decision Making Autonomy Inventory) are described and implications for future research, policy, and practice are discussed.
In 2006, the United Nations adopted the Convention on the Rights of Persons With Disabilities (CRPD) “to promote and protect the human rights of all persons with disabilities, including those who require more intensive support” (2006). The general principles of the CRPD (contained in Article 3) include “respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; full and effective participation and inclusion in society; and accessibility” (Glen, 2015, p. 5). Article 12 of the CRPD establishes the right of people with disabilities to legal capacity (Dinerstein, 2012). Legal capacity is “a relatively newly articulated human right” that is “completely disaggregated from the notion of mental capacity” (Glen, 2015, p. 4). Glen (2015) noted that:
… as a matter of human rights, every human being is deemed to have full legal capacity regardless of any disability, including disability in cognitive functioning, which she/he may have. Legal capacity means that every human being has a right to make her/his own choices and to have those choices legally recognized. (p. 4)
The right of legal capacity, as articulated in Article 12, requires States Parties (e.g., signatory countries and states to the CRPD) reaffirm, establish, recognize, and take appropriate measures to support people with disabilities to exercise legal capacity, and to ensure that safeguards are in place to ensure that actions and measures related to legal capacity “respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body” (Glen, 2015, p. 6).
The focus on legal capacity emerged in response to practice in the field that tended toward the placement of people with disabilities “in overbroad and unwarranted guardianships, losing their right to make choices regarding where to live, what to do during the day, with whom to interact, their personal finances and health care” (Blanck & Martinis, 2015, p. 24). Data on guardianship are limited, but estimates are that the number of people with disabilities under partial or plenary guardianship has tripled in the United States in the past 2 decades, from 500,000 people in 1995, to 1.5 million in 2010 (Schmidt, 1995; Uekert & Van Duizend, 2011).
Guardianship is “a legal process, governed by individual state law as opposed to unifying federal law, by which a court appoints someone (a guardian) to have the authority to make decisions for another (a ward or respondent) who has been determined to be either totally or partially incompetent” (Millar, 2007, p. 120). Guardianship is, by its very nature, an infringement on a person's right to legal capacity (Kohn, Blumenthal, & Campbell, 2013). When a guardian is appointed by a judge through a court proceeding, it has been determined that a person does not have the capacity to make decisions for themselves (Salzman, 2010).
In the United States, it has been suggested that some states “effectively encourage guardianship over persons with intellectual disability by creating special, streamlined processes for obtaining guardianship … that are not available for persons with other disabilities” (Kohn et al., 2013, p. 1116). But, in light of this and as per the CRPD, guardianship decisions should be considered in light of the obligation of States Parties to take appropriate measures to protect the right of people with disabilities to legal capacity, to provide supports needed to exercise legal capacity, and to ensure that such relationships (e.g., guardianship) are proportional and necessary.
As a means to ensure the right to legal capacity for people with disabilities, there is a movement toward adopting and implementing models of supported decision making (SDM) to minimize the use of more restrictive guardianship arrangements. SDM refers to any model in which “one or more trusted friends, family members, professionals or advocates” supports the person with cognitive limitations to make informed decisions (Blanck & Martinis, 2015, p. 26). In part in response to Article 12 in the CRPD, many countries have developed practices to enable SDM as a legal alternative to guardianship (Gooding, 2015). Each of these countries has highly individualized policies and practices related to guardianship and SDM, including some countries that place SDM along a continuum of legal options and others that only allow for SDM arrangements.
Gooding (2015) reviewed the international literature and identified several issues that remained to enable most countries to respond to the CRPD Article 12 call for equality in legal capacity: (a) setting parameters for how to interpret a person's rights, will, and preferences; (b) creating safeguards to minimize manipulation and undue influence by supporters; (c) clarifying boundaries between different types of support arrangements; (d) protocols for how to handle emergency situations; (e) explication of the limits of legislative or governmental mechanisms and the role of formal and informal resources and natural supports; (f) evaluating and monitoring risk; (g) the development of nondiscriminatory measures; and (h) empirical research on the impact of various support arrangements.
In the United States, SDM has received attention despite the fact that the CRPD has not yet been ratified. A number of U.S. states have begun to consider laws and policies pertaining to SDM (i.e., Delaware, Maryland, Massachusetts, New York, North Carolina, Texas, and Washington D.C.), with many states exploring continuum models where SDM is one of several options (The Arc of Indiana, 2016). Further, national centers have been funded, such as the National Resource Center for Supported Decision-Making (NRCSDM; Blanck & Martinis, 2015), and focused on developing model legislation and supporting model demonstrations of SDM at the local level.
As noted by Gooding (2015), the NRCSDM, and other researchers (Kohn & Blumenthal, 2014; Shogren & Wehmeyer, 2015), regardless of the legal arrangements and options available, enabling people to become actively engaged in the process of making decisions about their lives necessitates frameworks for understanding needed supports for decision making. There is a need for better understandings of how supports for decision making can be implemented in practice to promote personal agency of people with disabilities. The question becomes, how can supporters enable SDM? Shifting from a presumption of the need for guardianship to an understanding of SDM entails changes not just in legal options and practices, but also in the frameworks used to identify and put in place supports that enable people with intellectual disability to engage in the decision-making process.
Shogren and Wehmeyer (2015) proposed 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, recognizing that each person has specific capacities related to decision making and faces individualized environmental circumstances that create unique demands and contexts for decision making. Based on this framework, Shogren and Wehmeyer (2015) described supported decision making “as a personalized process that changes over the life course and involves an array of supports that are based on, at any given point in time, the person's abilities and environmental demands for decision-making” (p. 19). SDM empowers people with disabilities to utilize a combination of natural supports—friends, family, peers, community members—to provide supports for decision making as opposed to an appointed guardian to speak for the individual (Dinerstein, 2012).
However, work is needed to enhance understandings of SDM and its application to people with intellectual and developmental disabilities. One element that could be important to this process is an assessment of key aspects of SDM that can be used by people with disabilities and their systems of supports to identify decision-making capacities, environmental demands for decision making, and supports needed for decision making. Such an assessment tool could then be used to identify and plan for needed supports to enable decision making, promoting self-determination and quality of life outcomes, and also potentially reducing the need for guardianship. The purpose of this article is to describe steps taken to develop such an assessment tool, the Supported Decision Making Inventory System (SDMIS; Shogren & Wehmeyer, 2016), and initial feedback received from self-advocates with intellectual disability.
Development of the Supported Decision Making Inventory System
Researchers involved in the development of the Supported Decision Making Inventory System (SDMIS; Shogren & Wehmeyer, 2016) engaged in a multistep process to create an initial version of an assessment process that could identify areas of supports to enable people with intellectual and developmental disabilities to maximally participate in decisions that impact their lives.
Social Ecological Framework for Assessments and Interventions to Promote SDM
As noted previously, Shogren and Wehmeyer (2015) proposed a framework for considering supports for decision making based upon social-ecological models of disability. Such models “define disability as a state of functioning resulting from the interaction between personal capacities and environmental or contextual demands” (Shogren & Wehmeyer, 2015, p. 19). Social-ecological models of disability necessitate that one consider the capacities and support needs of the person and the demands of the context or environment and types of supports needed for the person to be successful within those environments. Thus, the social-ecological framework in which to consider assessment and interventions to promote maximal participation in decision making proposed by Shogren and Wehmeyer contains three domains of emphasis: (1) decision-making ability, (2) environmental demands for decision making, and (3) support needs for decision making.
Review of the Decision-Making and Supported Decision-Making Literature
Based upon the three-pronged framework forwarded by Shogren and Wehmeyer (2015), we conducted a comprehensive synthesis of the literature to identify what practices were in place. The findings from this synthesis were described in Shogren, Wehmeyer, Lassmann, & Forber-Pratt (in press). It is necessary to briefly summarize the synthesis, as it guided the development of items for the SDMIS, but see Shogren et al. (in press) for more detail.
In synthesizing the literature, we examined definitional frameworks for decision-making skills and competencies described in the literature, the contextual factors (i.e., personal and environmental factors) identified in the literature as influencing decision making, and the supports and support needs for decision making described in the literature. We focused broadly across populations to include knowledge in the areas of intellectual disability, mental health, and aging (and, thus, across disciplines that include special education, psychology, social welfare, and gerontology). Overall, we first found that there are few discussions of SDM in the intellectual disability literature that address issues beyond legal capacity and legal/policy aspects of SDM. Second, we found that there was overlap among populations (e.g., people with intellectual disability and concomitant mental health issues; people with intellectual disability who are aging) that would necessitate consideration of unique aspects of support needs. We also were able to identify abilities and competencies typically associated with decision making and personal and contextual factors that may influence decision making.
Item Generation for the Supported Decision Making Inventory System
Using the information from the Shogren and Wehmeyer (2015) framework, and information on decision-making abilities and competencies, as well as personal and contextual factors influencing decision making from the Shogren et al. (in press) review, research staff met to generate items for the SDMIS. The intent of the SDMIS is that the tool could be used across populations of people who are at risk for guardianship and could benefit from supports to participate in decision-making activities. The SDMIS was designed to be completed by an interviewer with the person with a disability and their close supporters, with the interviewer using the multiple sources of information to provide an answer to each question and enabling the participation of people with varying levels of communication support needs.
The decision was made to construct three “inventories” that, together, would form a system for determining areas of support needs to enhance decision-making abilities and competencies as well as to identify environmental and personal factors that would need to be accounted for in designing supports. These sections were titled: (1) Supported Decision Making Personal Factors Inventory, (2) Supported Decision Making Environmental Demands Inventory, and (3) Decision Making Autonomy Inventory. Each is described subsequently with information about assessment approaches. It was anticipated the assessment would take approximately one hour to complete, although additional time would be needed to use assessment results to develop a plan for SDM aligned with the person's needs.
Supported Decision Making Personal Factors Inventory
The SDM Personal Factors Inventory is intended to provide information with regard to the person's feelings about decision making, level of agency, and experiences with decisions. We used the competencies and abilities associated with decision making (see Table 1) that emerged from Shogren et al. (in press) and subsequent analysis of the steps of the decision making process to generate this list and the development of the Personal Factors Inventory. The first subsection, Feelings, is intended to provide information about how a person feels (believes, perceives) about issues that influence decision making. Table 2 provides the nine items in this section. Using whatever support they need to answer reliably, people with intellectual disability rate the degree to which each item is true for them (from 1–not at all true, to 5–very true). The second subsection, Agency, measures the degree to which people engage in agentic actions related to decision making and the level of support they need to do so. As with the first section, with whatever support the person needs to respond, the person responds to each item (see Table 2) with two responses: first, with an estimate of the level of autonomy (e.g., the degree to which the person does what is in the item) on a response scale ranging from low to high and, second, with a rating of the level of support needed to engage in the action identified in the item, also on a scale from low to high. The third subsection, Experiences, provides information about the degree to which (on a scale from low to high) the person has experiences related to decision making. Table 2 provides the five items in that section.
Supported Decision Making Environmental Demands Inventory
The SDM Environmental Demands Inventory assesses the degree to which the person is facing decisions in five key life areas (Health, Legal, Financial/Money, Social Relationships, and Independent or Community Living). There are eight identical questions posed for each of these key life areas. Table 3 lists those questions. Respondents (with whatever support needed) respond on a low to high scale with regard to the degree to which there are high-risk decisions needed to be made and whether they have opportunities, supports, and accessible information available to make high-risk decisions. The next set of questions follow the same approach, assessing the degree to which complicated decisions need to be made in the key life area, and whether opportunities, supports, and accessible information is available for them to make such decisions.
Decision Making Autonomy Inventory
The third and final inventory in the SDMIS is the Decision Making Autonomy Inventory, which measures the level of autonomy in which a respondent engages in the actions described in the item, and the level of support needed to do so. Both response items are rated on a Likert-type scale from low to high. There are 22 items, listed in Table 4, that were derived from the decision-making steps identified in the literature review (and listed in Table 1).
Once the SDMIS items were generated, researchers conducted two focus groups with adults with intellectual and developmental disabilities (three women, three men) to determine the utility of the process and the understandability of the items. A doctoral student trained to administer the SDMIS met with two focus groups, each consisting of three participants with intellectual and developmental disabilities and a support person. The first focus group meeting lasted approximately one hour and 30 minutes; the second one lasted about one hour. Participants were paid an honorarium for their feedback and participation. In both meetings, the process used was the same. The graduate student researcher began each focus group by stating that the aim of the meeting was to gather their opinions and thoughts on the understandability and clarity of items in the assessment. The graduate student also reminded participants throughout the process that they are not necessarily completing the assessment, but were, instead, providing feedback on the understandability and clarity of each item. Focus group members had written versions of the SDMIS and each item was read aloud by the graduate student researcher, who then asked if there were words or concepts that were unclear or confusing and, if so, what alternative wording would make the item more understandable. The support person assisted—consistent with the intent of the SDMIS—with providing further clarification and context for understanding the items. With consent from the focus group members, each session was recorded so that the graduate student could listen to all responses after the actual meeting to make sure that all thoughts, concerns, and suggestions were incorporated into the edited version of the SDMIS.
A major change made to the SDMIS after the first focus group was to reword some items from an objective to a subjective view (e.g., adding “you” or “I” to a number of items to make the item specific to the person responding). For example, an item that had been previously worded as “Initiates actions toward goals.” was revised to state “I take action to achieve my goals.” Additionally, several word choices in the SDMIS were identified as too difficult to understand and were changed to the alternatives recommended by the focus group members (i.e., “accessible” was changed to “available,” “complex” changed to “complicated”).
Structurally, the original version of the SDMIS had all items in the first section (Supported Decision Making Personal Factors Inventory) grouped together. After the first focus group, the recommendation was to break this section up, which resulted in the three subsections (Feelings, Agency, Experiences). The second focus group followed the same process, except participants were responding to items for the SDMIS that had been revised based upon feedback from the first focus group. There were several more wording changes to simplify words or clarify concepts, as well as several recommendations for revisions to the directions. Although the SDMIS is intended to be completed by a person with intellectual disability, the intent is that this is in partnership with a trusted support person. An accompanying procedural guideline document will assist interviews and their support persons to better understand the intent of specific items, rating scales, and other aspects of the process.
The SDMIS was developed to provide a process by which people with intellectual and developmental disabilities might, with one or more trusted support persons, identify areas in which they may consider supports that enable them to maximally participate in decisions that impact their lives. We would note that the premise upon which this process is based is not that people must become independent decision makers—indeed, for most meaningful decisions in our lives, most people make decisions in consultation and partnership with others. We turn back to the principle of partial participation as articulated by Baumgart and colleagues (1982), which states, essentially, that even if people cannot acquire all the skills that are required to function independently in an environment or complete a specific task or activity, they should have access to that environment and be enabled to learn those skills that they are able to maximize their participation in their lives. It is through such activities, we believe, that we achieve the CRPD principles of “respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; full and effective participation and inclusion in society; and accessibility” (Glen, 2015, p. 5). Future research, policy, and practice is needed that further examines the reliability and validity of the SDMIS and, more importantly, the degree to which it can be utilized by systems of supports to advance SDM, and the impact that effective supports for decision making linked to data from the SDMIS have on self-determination, quality of life, and guardianship status outcomes, enabling people with intellectual and developmental disabilities to exercise their right to legal capacity.
The research reported here was supported by the U.S. Department of Health and Human Services, Administration on Community Living, Administration on Intellectual and Developmental Disabilities, through Cooperative Agreement #90DM0001-01-00, National Resource Center for Supported Decision-Making, awarded to Quality Trust, with a subcontract to the University of Kansas. The research was also supported by the U.S. Department of Health and Human Services, Administration on Community Living, National Institute on Disability, Independent Living, and Rehabilitation Research through Grant 90DP0076-01-00 awarded to Syracuse University with a subcontract to the University of Kansas. The opinions expressed are those of the authors and do not represent views of the U.S. Department of Health and Human Services.
The authors would like to thank their colleagues at the National Resource Center for Supported Decision-Making for their support, including Tine Campanella, Jonathan Martinis, Peter Blanck, Meera Adya, and Mary Killeen.