The National Resource Center on Supported Decision-Making: From Theory to Practice

1. The National Resource Center on Supported Decision-Making: From Theory to Practice National Resource Center for Supported Decision-Making Tina Campanella CEO, Quality Trust Principle Investigator, National Resource Center on Supported Decision-Making

2. National Resource Center on Supported Decision Making (SDM) • Funded in 2014 by the Administration on Community Living • Focused on Research, Training and Information Sharing about SDM • Addressing the issues of people who are aging and people with disabilities • Linking development and reform efforts throughout the country • www.supporteddecisionmaking.org

3. Major Partners • Burton Blatt Institute • Kansas UCEDD • Autistic Self Advocacy Network (ASAN) • P2P USA/Family Voices • ABA Commission on Law and Aging

4. Some Goals for the Project • A national consensus on SDM • Changing attitudes regarding decision making and capacity • Local, State and National adoption of SDM as the preferred option for support • Principles and tools for interdisciplinary support for across the lifespan with people of varying abilities, challenges and life situations. • Increased collaboration and information sharing for implementing the principles of SDM. • Availability of training and technical assistance network promoting practices consistent with SDM

5. State Projects • Indiana • North Carolina • Delaware • Maine • Wisconsin National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

6. Your support, my Decisions! National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

7. A Paradigm not a Process Supported Decision-Making relationships can be “of more or less formality and intensity” ranging from informal support by people who “speak with, rather than for, the individual with a disability” to more formalized “micro-board[s]” and “circles of support” (Dinerstein, 2012) (Kohn et al., 2013) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

8. One Size Does NOT Fit All • Supported Decision-Making “is not a program • It is working with the person to identify where help is needed and finding a way to provide any help that’s needed • Solutions are different for each person. • The key question is “what will it take?” • The possibilities are endless National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

9. Three Core Elements of Supported Decision-Making Methods • They recognize the person’s right to make decisions on an equal basis with others; • They recognize that people can create a decision-making process that does NOT result in the removal of their decision-making rights; and • They recognize that people will often need assistance in decision-making through various means (Dinerstein, 2012) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

10. Common Supports Assistance to: (1) understand relevant information, issues, and available choices; (2) focus attention in making decisions (3) help weigh options; (4) ensure that decisions are based on their own preferences (5) as necessary, to interpret and/or communicate decisions to other parties. (Salzman, 2011) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

11. Issue #1: Human Decision Making • Many decisions made every day • Some big, some small • No standard process or measure of “goodness” • “Good” decision making seems part science and part art? • Who decides if our decisions are “good”?

12. Better decisions often: Improving Decision Making Poor decisions often: Focus on limited aspects of a problem or situation Consider only immediate benefits Oversimplify issues ie., good/bad, right/wrong Are influenced by emotional factors Are reactive Reflect an understanding of different perspectives Focus on both short and long range goals Look at multiple potential outcomes Include a process for analysis and thinking Use tools and resources for making decisions

13. Issue #2: Assessment Skills/Capacity Expectations Life Experiences Risk Environment Preferences and Interests Available Support Other Variables (individual and situational)

14. Issue # 3: Tools • Effective Communication • Peer Support • Written Documents • Agreements • Practical Experiences • Role Play and Practice • Life Coaching • Mediation

15. Critical Issues for Family Members • Explore the connection between decision-making and life experience • Develop a vision for the future • Have a plan…don’t wait until an important decision must be made • Understand all options for decision support • Power of attorney • Trusts • Representative Payee • Supported Decision-Making (SDM) • Guardianship

16. “Growth” Clause My agent and I will review this power of attorney to see if it should be changed or cancelled at least every two years. However, unless my agent and I change the power of attorney, I cancel it, my agent resigns, or either I or my agent dies, the power of attorney will continue. National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

17. Stay Tuned…. • Small Grant Projects will continue • Research underway • Website development is ongoing • Resource sharing • Research dissemination • Free Webinars • Annual Conferences • Check us out on Facebook and www.supporteddecisionmaking.org

18. About this Project This project was supported, in part by grant number HHS-2014-ACL-AIDD-DM-0084, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy. National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices