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

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 It is The Arc’s position that all people with I/DD can participate in their own affairs with supports, assistance and guidance from others, and The Arc focuses on the need to support people with I/DD to build decision-making skills from an early age and throughout their lifetimes in educational and adult life services systems.

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

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 Supported decision-making stems from the social model of disability. The “problem” is not in the person with disabilities, but in societies which create various barriers hindering the full and effective participation of people with disabilities. Guardianship is substituting the guardians decision for the person with a disability, supported decision making is empowering an individual to make the decisions in their own life. Natural supports are so important in making community for all a reality, having supporters in decision making, will create champions for those decisions.

Presuming Competence The question is no longer who can be included or who can make decisions, we begin by presuming competence. Talk a bit about Chris

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 Adults have the right to make their own decisions, and to be assumed to have capacity to do so unless shown otherwise – and capacity should be viewed as decision-specific.

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. Children and adults try new activities or experiences; succeeding at some and failing at others. However, for a person with a disability we tend to remove the possibility of risk in our attempt to protect them, and in our attempt, prevent them from trying new, possibly enjoyable and rewarding experiences.

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?

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

Conflicting Points of View Parents want to Protect, thinking beyond safety. Talk Chris

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 The person should be wary and mindful of any possible conflict of interest that might substantially compromise the support provided by an individual.  A supporter with conflicting motives would be positioned to exert undue influence on a vulnerable decision maker and should be avoided. Greater safeguards may be achieved by drawing on support from a group or a network of people or developing mechanisms to ensure supporters do not take advantage or abuse the trust placed on them

Conflicts of Interest Parents Spouses Friends Personal support workers

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 It is The Arc’s position that all people with I/DD can participate in their own affairs with supports, assistance and guidance from others, and The Arc focuses on the need to support people with I/DD to build decision-making skills from an early age and throughout their lifetimes in educational and adult life services systems.

Our Family Story

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.

Chris’ Program Struggle Every Behavior as a Form of Communication People can’t always communicate what they want, but they will communicate what they can

New Program

A slip, and a new perspective

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