RAISE Summit 2019 Charlie Walters, Able South Carolina Supported Decision Making and An Overview of Alternatives to Guardianship for Parent Training and Information Centers RAISE Summit 2019 Charlie Walters, Able South Carolina

BY THE END OF THIS TALK, EVERYONE WILL… Understand the basic limitations and consequences of guardianship Know some of the alternatives that exist Understand the general function of Supported Decision Making Pick up tools to explore the issues at hand further

BUT FIRST… How many of you are currently doing work around SDM or less restrictive alternatives to guardianship? How many of you are fielding regular communication from families on guardianship? How many of you understand the context in your state for SDM and are a part of capacity building around it?

For Young Adults with Disabilities Approaching 18… The environments they are in are often unique IEP Team Meetings and Special Education Doctors Visits Years old expectations and feelings about limitations on their potential The feeling of needing to do “something” as they approach 18 is common among parents Much effort has gone into making the guardianship process simpler Follow this link for an attorney’s website in AZ

The Real Scoop on Guardianship The rate of guardianships in the US tripled between 1995 and 2015 (TASH, 2016) 41% of people with ID/DD and TBI in the DD system are under full or limited guardianship (National Core Indicators, 2018) Loss of autonomy and self-determination is associated with higher incidents of abuse, neglect, and exploitation (Travers et al., 2014) People under guardianship are less likely to be employed (Nye-Lengerman et al., 2017) Process is expensive – attorneys, hearings, evaluations Very difficult to modify or terminate Tremendous and continuous responsibility of the guardian Life programs, employment

SURROGATE DECISION MAKING

FORMS OF SURROGATE DECISION MAKING Guardianship (Person) and Conservatorship (Financial) Power of Attorney Representative Payee (Social Security) Adult Healthcare Consent Act

SUPPORTED DECISION MAKING

SUPPORTED DECISION MAKING Supported decision making is a process in which individuals with disabilities are assisted in making decisions for themselves Individual as the decision maker, at the center of their affairs Provided support from one or more persons who explain issues to the them in a manner that he or she can understand There is no one model of supported decision making Some states recognize a specific SDM process, some folks like to have a notarized agreement, some like a durable POA with SDM described, and still others use SDM every day without a fancy name..

W.C. and Karl https://www.youtube.com/watch?v=Nel5RbQ-p-Q

Where We’ve Been and Where We Hope to Go in SC - Capacity building – website, tons of family counseling and trainings for case managers, educators, and attorneys; manuals for families and professionals The SC Supported Decision Making Project is a collaborative between P&A, our state’s PTI – Family Connection of SC, Arc of SC, and Able SC. It is funded by the SC DD Council. Follow this link to explore!: www.scsupporteddecisionmaking.org Lots and lots of folks are still being given legal advice in IEP meetings Medical providers are often behind recommendations for guardianship - State legislation recognizing SDM - Trainings and resources for medical providers - Data! More transparency on guardianship proceedings

NRC-SDM State Project “Stop, Look, and Listen: Planning for Independence and Adult Decision Making Support” Funded by the National Resource Center for Supported Decision-Making Draft assessment being piloted by two SC school districts Youth and adult input on opportunities to learn or practice critical skills Final tool slated for completion Summer 2019 Proactive, constructive age of majority conversations in annual review IEP meetings Taking a hard look opportunities to learn and practice critical skills If we know there are gaps in the acquisition of critical decision making skills, the role of the IEP team is to…

Questions? Email me anytime! cwalters@able-sc.org