On March 20, PRAGNYA was honored to welcome Steve Ruder from the UC Davis MIND Institute, Center for Excellence in Developmental Disabilities, who presented a workshop on “Practical Tools for Supported Decision-Making Teams.” Steve has 35 years of experience supporting neurodiverse individuals with independent living skills and supported employment, and became involved in the Supported Decision-Making (SDM) field in 2016. He first started working with the American Civil Liberties Union on this project, and later worked on developing a toolbox of resources for families.
Families of neurodiverse individuals are often not aware of alternatives to the traditional conservatorship process, nor the possible drawbacks or unintended consequences. Steve emphasized that no one is born with decision making capabilities; people begin to develop these skills in adolescence, and continue to do so as they mature. There is also an incorrect perception that if a parent doesn’t have conservatorship, they will lose all access to their adult child’s information, which is not true. In fact, the existing system has over-conserved many people who didn’t need to be, since there is not a system of checks and balances in place. Assembly Bill 1663, currently going through the State Legislature, addresses some of these concerns, proposing to revise conservatorship statutes. Currently, judges are reluctant to undo conservatorships, and there is often an “all or nothing” reasoning, that if the person does not have the capacity to make decisions in only one area, that he or she automatically does not have capacity to do so in any of the seven areas of limited conservatorship.
There are certain instances in which conservatorship may be appropriate for some individuals who are severely impacted by their disabling condition. However, Supported Decision-Making is about making families aware of alternatives, and helping their adult children have a voice in the decisions that affect their lives. People who are neurodiverse are often not listened to and not heard; SDM directly addresses these concerns by empowering them to make their own choices.
Steve also noted that challenges with the decision-making process are not unique to people with disabilities. The decision-making abilities of any neurotypical person at some point can also be affected by illness, trauma or other reasons. Steve then covered in detail the elements of the PRACTICAL tool, initially developed by the American Bar Association to guide attorneys whether conservatorship is necessary. “PRACTICAL” is an acronym that stands for:
• PRESUME – conservatorship is not needed, and consider less restrictive options
• REASON – clearly identify the reasons for conservatorship
• ASK – if it is a temporary or reversible condition
• COMMUNITY – connect the individual or family with community resources
• TEAM – ask if they have a support team
• IDENTIFY – areas of strengths and limitations
• CHALLENGES – screen for potential challenges
• APPOINT – a legal supporter or surrogate
• LIMIT – any necessary conservatorship
Different people can support different things in different ways. Formalizing supported decision-making allows the parties involved to: discuss strengths and challenges; define and limit areas of support; allows people to choose whom they want as supporters; allows people to define areas each supporter assists with; and can be an invitation to a deeper relationship. These arrangements can be formalized through aSupported Decision-Making Agreement (SDMA). Steve shared a sample SDMA and also simplified HIPAA forms and other medical forms for medical appointments, hospitalization, and a simplified advance directive. Steve concluded the presentation with some suggestions for finance supports and safety supports while living independently.