Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities
Making it Happen: Strategies for Supported Decision-Making
The last decade has seen a surge in Supported Decision-Making (SDM) legislation, policy, and practice. However, much of the research and scholarship on SDM has focused on the theories behind and benefits of it, especially as compared to guardianship (e.g., Glen, 2015). Comparatively little has been written on the practice of SDM or provided practical advice on ways people may engage in SDM themselves or with people they support (e.g., Campanella, 2015).
This article discusses four SDM strategies first identified by Gustin and Martinis (2016). However, it is critical to note that there is no “one and only way” to use SDM. Therefore, the following strategies are meant to help people identify and implement SDM methodologies that work best for them rather than set forth prescriptive practices that must be followed to use SDM.
Think, Talk, and Listen
To be effective, SDM must focus and build upon the person’s abilities and preferences (Campanella, 2015). Therefore, SDM should begin with the person being encouraged and supported to identify the life areas and decisions where he or she wants to use SDM.
There are tools and resources that can help with this process. For example, When Do I Want Support (American Civil Liberties Union, n.d.), lists a series of common decisions involving work, health, relationships, finances, and other life areas. After each, the person is asked whether he or she can make that decision without support, could make it with support, or could not make it even with support. This information may help people and their supporters discuss and identify the times and ways they want to use SDM.
Next, people should explore and identify how they want to be supported. This should begin with the understanding that they may want to use different kinds of support, at different times, for different decisions (MODDC & SES, 2018).
To begin, people and their supporters should discuss ways they may be able to use SDM in the life areas identified in the first step. Areas to explore could include: How have they made decisions before? Has someone supported them before and, if so, how? Are there methods or support they have used successfully or have heard about that they would like to try in the future?
The Supported Decision-Making Brainstorming Guide (American Civil Liberties Union & Quality Trust for Individuals with Disabilities, n.d.) may help people identify ways they already use SDM and ways they can do so in the future. This may also help them identify people and professionals that can provide that support, based on support they provided previously.
Find and Work with Supporters
Next, people should identify and work with the people and professionals in their lives to implement the support they want. They should consider support that does or could come from friends, family members, professionals, or agencies such as schools, Centers for Independent Living, Medicaid waiver providers, and others (MODDC & SES, 2018).
The Setting the Wheels in Motion guide (Francisco & Martinis, n.d.) can help people and their supporters navigate this process. The guide includes worksheets to help people identify current or potential supporters, the support they can provide, and how they may work together as an SDM team.
Put it in Writing
Finally, people should memorialize when and how they use SDM. This can be done in many ways including through Supported Decision-Making agreements; powers of attorney, advance directives; and program-specific support plans such as Individualized Education Programs, Individualized Plans for Employment, and person-centered plans.
In whatever form it takes, the SDM plan should specify: 1) The life areas and decisions where the person uses SDM; 2) the support that will be provided in each; and 3) the people (including professionals) who will provide the support. People should share their plans with the people in their lives to inform them that they use SDM and that they should respect their decision-making process. Written SDM plans may also protect people if someone tries to put them in guardianship or otherwise challenges their right to make decisions (MODDC & SES, 2018). The National Resource Center for Supported Decision-Making has created templates for SDM agreements that may be used or adapted.
American Civil Liberties Union. (n.d.). When do I want support: Supported decision-making assessment tool. Retrieved from https://www.aclu.org/other/when-do-i-want-support-supported-decision-making-self-assessment-tool
American Civil Liberties Union & Quality Trust for Individuals with Disabilities. (n.d.). Supported decision-making brainstorming guide. Retrieved from http://supporteddecisionmaking.org/node/388
Campanella, T. M. (2015). Supported decision-making in practice. Inclusion, 3(1), 35–39. Retrieved from https://doi.org/10.1352/2326-6988-3.1.35
Francisco, S., & Martinis, J. (n.d.). Supported decision-making teams: Setting the wheels in motion. Retrieved from http://www.supporteddecisionmaking.org/legal-resource/supported-decision-making-teams-setting-wheels-motion
Glen, K. B. (2015). Supported decision-making and the human right of legal capacity. Inclusion, 3(1), 2–16. Retrieved from https://doi.org/10.1352/2326-6988-3.1.2
Gustin, J., & Martinis, J. (2016). Change the culture, change the world: Increasing independence by creating a culture of coordinated support. Apostrophe Magazine. Retrieved from http://apostrophemagazine.com/vermont-change-culture-disabilities
Missouri Developmental Disabilities Council & Something Else Solutions, LLC (MODDC & SES). (2018). Do I have to get guardianship? Retrieved from https://www.moddcouncil.org/?page_id=whatsnewstory&id=68
This article was supported, in part, by funding from the U.S. Department of Health and Human Services, Administration on Community Living, through Cooperative Agreement #90DM0001, and National Institute on Disability, Independent Living, and Rehabilitation Research through Grant 90DP0076-01-00. For additional information on these and related grants, see www.BBI.Syr.Edu. The opinions expressed in this article are those of the authors and do not necessarily represent the views of the U.S. Department of Health and Human Services or any other funding agency.