Charting the Cs logo with black and blue text Charting the Cs Conference 2025: To Literacy and Beyond Cooperation Communication Collaboration Rethinking Guardianship for Transition Age Young Adults with Disabilities: The Promise of Supported Decision Making April 30, 2025 Anita L. Raymond, LISW, CMC Objectives •Explore reasons why families are often encouraged to seek guardianship when their child with disabilities turns eighteen and how to address concerns regarding safety, access, and vulnerability •Understand the benefits and potential downsides of guardianship •Describe decision making options for those with impaired decisional capacity, including supported decision making Historically… Happy 18th Birthday! Let’s talk about guardianship! •At diagnosis •Young teens or pre - teens •Other families •Benign, necessary step •Required by IDEA Changing Perspectives About Guardianship •No longer the default •Policy, law and best practices emphasize self - determination and person - centered approaches •Removal of civil rights, transferred to guardian •Good intentions may lead to bad outcomes oOverly protective decisions oFalse sense of security oIncreased risk of abuse oPerson never learns how to be a good decision maker Harsh Realities of Guardianship (potential) •Decreased or no sense of agency / self - determination •Perpetual childhood •Resulting feelings: frustration, anger, defeat •Reactions oIncreased resistance, decreased cooperation oCommunicating their emotions by “acting out” or “behaviors” oDepression, isolation oLearned helplessness Practical Realities of Guardianship •Consent power, not compliance power •Bill of Rights: oright to due consideration of preferences oright to interact with people of their choosing •Future considerations owhat skills/supports are needed when guardianship ends in 72 months? osuccessor guardian when current is not longer able to serve? Legal Realities of Guardianship MN Law Requires Trying Alternatives First •Impaired, lacking capacity to make decisions + •Unable to meet personal needs, even with help + •Identified needs can’t be met by less restrictive means, including oTechnological assistance oSupported decision making oCommunity or residential services oAppointment of health care agent Key Questions •Incapacitated to do what? •What has been tried, for how long, and why didn’t it work? Is Guardianship All Bad? Should We Abolish It? •No! Guardianship is a valuable, effective, and necessary tool. When it’s needed. •Guardianship is the best tool when: oneed for protection and substitute decision making outweighs possible harms and unintended consequences opowers of guardianship will effectively address the problem oact of removing rights for the person’s own good won’t worsen the situation osituation is so dire and there is no other way to address the person’s unmet needs or maltreatment or safety concerns oall less restrictive options have been eliminated Contemplating Parental Authority •Parents/legal guardians of minors: legal decision makers for all decisions oLegal decision making authority? yes oChild obeying/abiding parental decisions? Maybe •“I want” “I won’t” “You can’t make me” •Navigating and gaining compliance and cooperation •Planning for child’s age of majority: “goodbye and good luck”? Ready for adulting: college, student loans, residence, prescriptions, banking preparations, car insurance, broken hearts, job choices Transitioning to Adulthood •Legal decision - making rights transferred to young adult Exceptions: alcohol consumption, car rentals •Cognitively ready? •Emotionally ready? •Practically ready? •Young adults: ready for complete independence? oWithout disabilities: very, very few are totally independent oWith disabilities: very, very few are totally independent Conversations with Students and Parents •“Your legal decision - making rights transferred to child when they turn 18…” “…unless you get guardianship” vs. “….so let’s start planning” •Planning for adulthood oWhat areas still need more skills and knowledge development? oWhat areas need someone to do for them? oLearning how to be good decision makers Changing Drivers Teenager during driving lesson •Parent was the driver, child was passenger •Now, young adult is in the driver’s seat •Parent in passenger seat for some trips •Parent in back seat for some trips •Parent doesn’t need to be in the car for every trip •Parent and young adult prepare for reasonably safe trips together Supported Decision Making: It’s the Law Assistance from one or more persons of an individual's choosing in understanding the nature and consequences of potential personal and financial decisions which enables the individual to make the decisions and, when consistent with the individual's wishes, in communicating a decision once made. MN Statute 524.5-102, Subd. 16a Supported Decision Making Highlights •People who need help with decision making receive the help they need and want •Preserves rights and builds on existing capacity with real life experience and learning •Essential element for achieving self- determination & meaningful inclusion •An empowering, skill - building, transformative approach to assisting people An infographic explaining Supported Decision-Making (SDM) for individuals with disabilities, covering its definition, current challenges, rethinking support, providing support, and actionable steps. It emphasizes autonomy, inclusive decision-making, and personalized assistance strategies. Principles of Supported Decision Making •No one is completely independent •How we all make challenging decisions: oTurn to trusted others or experts oGather information needed to make decision •People who have agency / self-determination have better outcomes Identifying Areas of Needed Support / Skill - Building •Money management •Health care decisions / managing health conditions •Applying for MA Waiver, accessing Home & Community Based Supports •Special Education participation •Life Skills, Dating, Community Safety, Jobs Powerful Tools: Supported Decision Making •Coaching/on - line resources to teach good decision making in relationships •Tech: oSmart Phones: GPS, Maps, medication reminders, etc. oApps: Let Me Do It; Can Plan; Monefy •Creativity required: countless ways to support person’s safety and well-being SDM Planning Tools and SDMAs •Charting the Life Course Framework •SDM Brainstorming Guide •How to Make a Supported Decision-Making Agreement •National Resource Center on Supported Decision Making Remember: Written Supported Decision Making Agreements are NOT required ! More Powerful Tools •Representative Payee •Banking tools •Trusts, Power of Attorney •Appoint Health Care Agent (Health Care Directive) •Authorized Representative for MA / Waiver applications •Releases of Information (education, health, social service systems) •Person - Centered Planning process But What About Bad Choices, Safety, and Vulnerability? Building Scaffolds of Supports •Relationships •Community •Skill - building •Safety Nets •Risk/harm reduction •Goal: as safe as necessary (vs. as safe as possible) Bad Choices or Human Choices? •Alcohol and other substances •Online dating •Dating and intimacy •Giving money to others •Medication choices •Food choices •Friend choices •Residential and care choices Helping Families and Student Navigate “Bad Choices” What is the Issue? Listen with non-judgmental true curiosity •Why is the choice important to the person? •Why do they want to…? Why don’t they want to…? •Is the choice really about something else? oTrying to claim a sense of control in their life oExpressing frustration or anger or fear oWant to do what their peers are doing •Person is just dreaming out loud? Navigating Choice & Safety •Help student understand how it will impact desired outcome, goals, and desires •Person - centered approaches oInquire to understand what is important to the student (personal choices) oHelp student understand what is important for the student (health and safety) oFind ways to leverage important to so you can achieve important for. •Use leverage, negotiation, trials to find balance between safety and choice (happiness, quality of life) •Creative way to meet both? (temporary tattoo, GPS in phone) •Set them up for best chances of success instead of setting them up to fail? oWhat will they accept? What are they willing to try? oWhat can we live with? oTrials, skill - building, coaching, partnering •Revisit later •Trusted relationship with supporter oIs there someone else to have this conversation with them oIf they feel we’ll blame, restrict, they will never come to us if struggling Summary: Supported Decision Making Key Principles •Philosophical, transformative approach ohelps people receive the help they need and want opreserves rights and builds on capacity with experience and learning oEssential element for achieving self - determination & meaningful inclusion •Viable, legal less restrictive alternative to guardianship •Umbrella term encompassing several (countless?) options •Everything we do to help person make decisions to get their needs met •Balances choice/quality of life with safety •How we all make decisions Summary: Supported Decision Making Takeaways •No court involvement •Better chance of preserving relationship(s) •Less expensive •Better outcomes for the person •Along with additional tools, can accomplish a lot of what is sought in guardianship and/or conservatorship •Required by law to try before seeking guardianship/conservatorship Summary: Guardianship Might Be Needed •Person can’t or won’t cooperate with others to get their needs met or help them make decisions (and we can’t overcome this resistance) •Person can’t appoint someone to help with decision making (Health Care Agent) •Person can’t sign a Release of Information to allow others to gather information and talk to providers •Rep Payee and Authorized Rep insufficient to meet needs Education Professionals Play a Critical Role! •I don’t need a guardian. I just need a little help. ~ Jenny Hatch •To deny the right to make choices in an effort to protect people with disabilities from risk is to diminish their human dignity. ~ Robert Perske A man in background holding up a victory fist; young woman in foreground laughing Center for Excellence in Supported Decision Making A logo for the Center for Excellence in Supported Decision Making (CESDM), affiliated with Volunteers of America Minnesota and Wisconsin. It promotes supported decision-making for individuals with disabilities. •Assessments •In - depth, personalized consultations for individuals, families, communities, professionals •Technical Assistance, trainings, education sessions Guardianship Information Line •952 - 945 - 4174 1 - 844 - 333 - 1748 (toll free) •cesdm@voamn.org For More Information •CESDM: links to articles, G&C FAQ and more www.voamnwi.org/center-excellence-supported-decision-making •SDM / Gship Information Videos youtube.com/playlist?list=PLKJYnxTHNgqVUVjdT6NL29vvLqSQu0l-F Attribution & Gratitude This training was funded in part by t he Minnesota Department of Human Services , Aging and Disability Services Division Charting the Cs logo with black and blue text Thank you! Anita Raymond, LISW, CMC Director, Center for Excellence in Supported Decision Making 952-945-4172, araymond@voamn.orgaraymond@voamn.org Guardianship Information Line 844 - 333 - 1748 (toll free) 952-945-4174, cesdm@voamn.org Charting the Cs logo with black and blue text Charting the Cs Conference 2025 Statewide Professional Development to Support the Workforce and Low Incidence Disability Areas in the State of Minnesota. This presentation is partially funded with a grant from the Minnesota Department of Education using federal funding, CFDA 84.027A, Special Education –Grants to States.