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Supported Decision-Making: Promoting Self-determination & Dignity of Risk

Learn about the importance of supporting individuals with I/DD in making their own decisions and taking risks. Explore the concept of dignity of risk and the consequences of not presuming competence.

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Supported Decision-Making: Promoting Self-determination & Dignity of Risk

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  1. Supported Decision-Making: Promoting Self-determination & Dignity of Risk Presented by: Christopher Jorwic andNicole Jorwic, Senior Director of Public Policy, The Arc of the United States

  2. The Arc’s Position Regardless of their guardianship status, all individuals with I/DD should be afforded opportunities to participate to the maximum extent possible in making and executing decisions about themselves. Guardians should engage individuals in the decision-making process, ensuring that their preferences and desires are known, considered, and achieved to the fullest extent possible. • From The Arc’s Autonomy, Decision-Making Supports and Guardianship Position Statement

  3. Supported Decision Making, We All Do It!! • Think about everyday choices you make • Changing jobs • Moving • What to have for dinner

  4. Why Supported Decision Making Matters Moving away from a paternalistic and medical model of disability; Empowerment vs. Substitution Natural way to grow a circle of support

  5. Presuming Competence

  6. False Security “Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure or it is nothing.” -Helen Keller

  7. Dignity of Risk • The concept that acknowledges that risk is a natural part of life that helps all people learn and develop. • The freedom to make mistakes, to make decisions for ourselves, even if others believe that that choices could be in error.

  8. Dignity of Risk What if you never got to make a mistake?What if your money was always kept in an envelope where you couldn’t get it?What if you were never given the chance to do well at something?What if your only chance to be with people different from you was with your own family?What if the job you did was not useful?What if you never got to make a decision?What if the only risky thing you could do was to act out?What if you couldn’t go outside because the last time you did it rained?What if you took the wrong bus once and now you can’t take another one?What if you got into trouble and you were sent away and you could never come back because they always remember you are trouble?What if you worked and got paid 46 cents an hour?What if you had to wear your winter coat when it rained because it was all you had?What if you had no privacy?What if you could do part of your grocery shopping but were not allowed to because you couldn’t do all of your shopping alone?What if you spent three hours each day just waiting?What if you grew old and never knew adulthood?What if you never got a chance?

  9. Consequences of NOT Presuming Competence • Not enough focus on building skills, assuming people belong on a single “track.” • Individuals with disabilities may be left out of decisions around their services and every day life. • Medical Care • Difficulties entering into contracts

  10. Conflicting Points of View

  11. Conflicts of Interest • Retaining capacity provides protections from many forms of abuse or exploitation • Power dynamic shifts • Conflict of interest provisions should restrict who may serve as supporter: • Doctors • Those with major financial conflicts of interest • Provider staff

  12. Conflicts of Interest • Parents • Spouses • Friends • Personal support workers

  13. The Arc’s Position Regardless of their guardianship status, all individuals with I/DD should be afforded opportunities to participate to the maximum extent possible in making and executing decisions about themselves. Guardians should engage individuals in the decision-making process, ensuring that their preferences and desires are known, considered, and achieved to the fullest extent possible. • From The Arc’s Autonomy, Decision-Making Supports and Guardianship Position Statement

  14. Our Family Story

  15. Chris’ Words On Early Memories… I remember being with Michelle all the time.  She would climb into my crib and play games and sing.  I remember that she had a very scratchy voice that made her sound terrible. I remember Coley watching a lot of tv and dancing with Michelle when they were supposed to be cleaning on the weekends. And I could laugh and get away with anything as the only boy.  I remember baby Luke. People may find it strange that I have memories from when I was so young but when I got trapped in my body by autism and lost my voice and my smile I replayed all of those memories like videos in my mind so that I wouldn’t get lost forever. I knew, even at that age, that I had to hold onto my family and that they would help me out. I knew that my mom and my dad were scared and confused, even more then me. I knew that my siblings would laugh, smile, sing and dance enough for me until I was found.

  16. Chris’ Program Struggle

  17. New Program

  18. A slip, and a new perspective

  19. Questions? Feel free to contact me: Jorwic@thearc.org

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